Thank you for this web site and for all that you have done all ready in Dan’s name and for his fans. I received the e-mail regarding the “Don’t Lose Heart” web site and coincidentally much earlier that day I had also just watched a YouTube video for the first time of Dan’s song “Don’t Lose Heart” for the first time. I had first watched two other videos of his (Old Tennessee & Mountains to the Sea, newer songs for me I’ve recently discovered of his from the “Introspective Interview” CD) and was so overcome with sadness over his loss during that moment it brought me to tears. I felt incredible sadness and pain. The next thing I know, I’m watching the “Don’t Lose Heart” video, a song I wasn’t that familiar with. It spells out the lyrics to the song as it plays it and I found myself once again, being inspired and uplifted by your husband’s amazing gift of song he shared with the world. I found myself thanking and agreeing with him through very tearful eyes and I felt better.
A few days later, my mother-in-law had some bad stress in her life and her blood pressure had shot up to dangerous levels. I e-mailed her “Don’t Lose Heart.” She loves animals as do I and so I also e-mailed her “A Cry in the Forest.” She loved them both.
I am a caregiver for my mother as well. She may have either Frontal Temporal dementia or Alzheimer’s (the doctors can never be 100% sure apparently) and she’s in her 12th year of it. I moved her out of Florida and in with us here in NC once the resources dried up after having paid caregivers 24/7 for years to take care of her and my father while he was still alive. It is stressful on me, but at the end of the day when I go to bed, I am relieved she is safe, clean and not being abused. I am really disappointed in her parents, sisters and her son and how they have treated her and me though. I feel like they don’t care at all anymore and as far as the (POA to their parents) sisters go, I have a terrible feeling that they are distancing me and their sister over inheritance greed once their parents pass away some day. My mother doesn’t have a voice anymore, but someday especially if she gets worse she may need to go in a nursing home and I’ve all ready experienced how “bad” even the so-called “good” ones are when I had her there for a temporary respite stay when we tried to get away for 5 days over the summer.
She ended up being sent to a hospital and then 1 ½ hours away to a psychiatric ward where they kept her for 4 weeks and she came back to me grinding her teeth so badly from the drugs they had her on it was awful. That all happened because she got out of the facility I had her in for the respite stay, otherwise they said she wasn’t a harm to anyone! The one sister & the only one that communicates with me anymore is always suggesting I get her Medicaid approved so she can go into one of those types of “Medicaid” nursing homes. She seems to have it all figured out, not realizing there’s really no such thing as a free lunch. I feel really alone in all of this. I can stay home & take care of her only because my husband has always had a good job. They owe “him” a big thank you if anyone. Now he is currently under much stress right now as well after finding out his company that he’s been with for 19 years is closing its plant here. He and my son gave up their play area down in our basement for my mom to live down there.
If the family back in Florida would have offered to chip in a small amount each, we could have kept her there in her familiar surroundings where she was happiest. She used to enjoy being able to go visit her parents who lived in the same neighborhood as she down the street. She bought the house while she was still of sound mind to be close to them, not to be near me here in NC. The parents, the sisters – they’re wealthy. (The two sisters both have second summer vacation homes.) These are people that I always loved and looked up to all my life and now they have devastated me and they act like they don’t realize it or care. It’s amazing how fearless some people are or become when it comes to money. (Fearless, as in judgement day fearless…)
Well that’s some of my story anyways but it’s what I grapple with in addition to the enormous responsibility of caring for my mother and being her 24/7 caregiver. I worry I am neglecting my family. I worry she is not getting enough of my personal time. I worry, worry about many things. I have been so busy worrying about my parents for the last 6 years, I’ve not had a second child and I’ve not gone back to work, so it’s taken its toll on my life and it is what it is. I’ve done my best. I hope I can take care of my mom for a long time, but I don’t know what the future holds for her or for my family right now.
Karen
Hi, Karen. I just came here to read your story. You posted to me some time ago on the “Regret” page. First, thank you for your kind words. Second, thank you for sharing your story. My story is on here too under Cindy E.
What caught my eye was something you said about not being sure what kind of dementia your mother has. FTD(Fronto-Temporal Dementia) is an extremely difficult disease to diagnose. Have you done much research? It sounds like she could have a form of FTD. Loss of language is a very common symptom. They can never diagnose FTD 100 percent until they biopsy the brain. There is a list of perameters and a neurologist uses their judgement to say if it’s early onset AD (Alzeheimer’s Disease) or FTD or other kinds of dementias.Have they done a PET scan? FTD is a global term for dementia that shows up in the frontal lobe of the brain. Dianna’s (my best friend) dementia is progressing textbook FTD with behavioral issues. The repetitve behaviors, the repetetive language, the regression of basic self-care, inability to learn anything new, inability to perform menial tasks, confusion on the order of things. It can also present like your mother’s version. First using the wrong words for everyday objects then using the wrong words in sentences and eventually being unable to speak at all. There’s a book called “What If It’s Not Alzheimer’s? A Caregiver’s Guide to Dementia” which you can buy used at Amazon for fairly cheap. It was very helpful and maybe you might get some answers as to what is going on with her and a little insight into her issues.
Also, you mentioned that you had to put her in a facility because of your own health.I have been struggling with this one for awhile! I believe that, even if it’s just an aide coming a few hours a day, she would be getting much better care than we alone are giving her. She has become more and more difficult to handle. She gets into trouble by foraging in the kitchen and eating non-food items because she thinks she’s hungry but she just ate. Her speech is muddled and confused and at times child-like. Sometimes she uses a weird accent. Her words are meaningless and she can curse like a truckdriver!As she has deteriorated, (very rapidly since diagnosis 2 years ago)I can’t help but think that she would be better off in a skilled nursing enviornment but am torn at the thought of leaving her somewhere.
I had to put both of my parents in a nursing home (a number of years apart as my mother died 14 years ago and my dad passed in ’07) and as hard a decision as that was, I know now that it was right. If Dianna’s husband decides to find a skilled facility for her, I will still spend my days off with her but I will be spending time with her not taking care of her!
You had also mentioned the inuslin nasal spray. Most dementia treatments are for Alzheimer’s patients and FTD is very different. Dianna is on an AD med called Namenda which does seem to calm her agitation. But most things they try on her seem to agitate her even more.
I have not been visiting this site for quite some time because of my crazy care-giving life. I hope that you have been able to get some answers as to what is going on with your health and that you are well. And I hope that the little bit of info I shared may help you. We are all in this together here at DLH. Even though I don’t get on as much as I would like, it is still a place where I come for comfort, insight, and support!
I wish you peace in your heart. Cindy E
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Dear Cindy, hi there, thank you so much for writing to me. I haven’t been on in a little while having been just trying to focus on my mom at her new facility and trying to make sure all goes well there. It’s been a bit challenging, but so far we are working through it and I enlisted the help of an Ombudsman to help advocate on behalf of my mother and I think it all went well and we’re on all the same page now hopefully, fingers crossed. Yes, Frontal Temporal dementia was brought up to me by “one” doctor whose grandmother had it & only met my mom once. She too was anxious to put my mother on anti-psychotics b/c she was so active (my mom wouldn’t sit still while she the doctor sat next to her blocking her in at my breakfast nook couch table). I never did use them b/c I was taking care of her in my home and didn’t see any benefit to drugging her up into a stupor, but in facilities where they can get into more trouble, some may be more quick to prescribe as is in the case of where my mom is at now. The last place she was at, did not see the need for those drugs. Everyone has a different tolerance level and opinion I guess. Anyways, back to the FTD, my mom had an MRI about 6 or so months ago and I asked the psychiatrist if it indicated that she had FTD and he said not in the frontal lobes, no. There was some atrophy in the sides though. So, he leaned more towards Alzheimers, but for me at the end of the day, it’s still dementia no matter what label we put on it. She is currently under the care of a psychiatrist now, & he just saw her for the first time last week, so we’ll see how things go now. The great news is I have an e-mail address for him and I plan to utilize it to keep him updated on what I see and am told. In other words, I am not going to rely solely on the staff communicating everything to him.
Now here’s the important part Cindy: you need to be aware that labeling her FTD and it does sound to me like that’s what she has will make it difficult at some facilities to get her accepted into them. Some, believe it or not, will NOT take those patients. There is always a nurse assessment first before they accept any patient and my mom failed to get past many of them when we were looking for respite facilities. They did not want to deal with her even for a short-term stay. They much rather preferred the elderly wheel-chair bound patients that sit or lie in their beds all day. The problem with my mom and your friend as well is they are both young and still physically healthy. My mom is only 72 and she took good care of herself while she was healthy so she is still active, ambulatory, she can walk, a lot! She’s not interested in sitting around all day in a trance. That speculation of FTD by that one doctor got innocently repeated by me to other doctors and it started to get written down as a “may have FTD” following her around on her paperwork before I realized what a problem it was turning out to be for us. Fortunately, I took care to make sure that did not happen at the current facility she is at that we got her in and they accepted her with no prior nurse assessment as well, but as a transfer, so I guess they weren’t expecting a patient that had some behaviors. My mom’s behaviors consist mainly of shutting doors and wanting to eat and drink all the time. That was enough for them to put her on a fairly high dose of Seroquel to try and slow her down. The bottomline is if your friend goes into a locked unit eventually, there are no separate units for Alzheimers and separate facilities for FTD patients, so I suggest you either have a hospital place her or utilize a social worker on your behalf. You and her family are definitely going to need help with this and please enlist good people to help you, so you can place her in the best possible care and she doesn’t end up somewhere awful or out of her area. How long has Dianna had this for? My mom has had it for 12 years now and she started off with just mixing up her words or using the wrong words and then slowly kept losing more and more of her speech skills. However, she held on to her musical skills for a long time and I was amazed to see that even though she could barely speak words anymore she would practice her piano book so much that she had learned every song and with skill, in other words, her practicing was making her play better, which told me she was still capable of learning things, interesting right? The disease process won out though in the end and she eventually couldn’t read the music anymore, but still enjoyed playing though. She would just sit and do her own thing and turn the pages of her book playing in her mind and humming along too. So cute, right! Well, I’m typing as fast as I can b/c I have to go now Cindy, but I was so delighted to hear from you. Let’s keep in touch. And, I’m glad you mentioned the Nemenda to me b/c I know her psych dr. is probably going to take her off the Aricept & I am going to ask him about that Nemenda instead, esp. since you said Dianna seems to have benefitted some from that. You all will be in my prayers and please know that some of the behaviors go away after time and change. So just b/c she’s doing one thing in particular or behaving in a certain way, doesn’t mean that it will always be that way. It’s not all bad from here on out, it will change and get better eventually too. We’ll stay positive in our thoughts for that for her. Please take care of yourself Cindy! I’m trying hard to do the same here. Big giant hugs to you and Dianna, Love, Karen
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Karen,
You are doing an outstanding job with and for your Mom. Researched all her meds, met with all the right people, and you have a handle on the situation. I know things will fall into place, it might just take a while. Of course when it concerns your Mom, I know you want everything to be just right and in a very timely fashion.
It is my hope that you have some time for yourself and husband and son. We all have come such a long way since DLH was born, almost one year ago. You are an amazing caregiver, and if I had a daughter, it would be wish, she was someone as intelligent, and kind as you. Be well.
~Char
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Oh Char, you are always so warm and wonderful, thank you so much for your sweet words, they mean the world to me. I solved the problem of her trying to get in the refrigerator at the facility by putting childproof locks on it and her nurse on the weekend called me yesterday to tell me how well she was doing and how great that had worked out. Today, different story. Her new roommate they gave her is bed-ridden and on oxygen 24/7. Today they were giving her a bed bath and mom was fussing with them in the room and took her blanket off her bed at one point. I heard from the nurse, the doctor, they added new meds, the doctor questioned whether meds would even make any difference and that she might have to go somewhere else. I asked him had she hurt anyone yet and he said no, but I see they don’t want her there. He’s verbalizing these things to me all ready. This is all after the administrator asked me last week what kind of a roommmate did I think would be a good fit with her and I told them someone who wasn’t in their room all day long, as my mom likes her privacy. So they seemed to do just the opposite. My nerves are going to be shot soon. I feel so tired all the time now, maybe it’s the weather. Tomorrow is another day, fingers crossed.
Hugs, Karen
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Karen,
What a roller coaster ride you are on, up and down and all around. The good thing is you are on top of all of it, even knowing ahead of time, what the care facility is hinting at. Of course that is the bad thing too. All of this just puts more stress on you. I know how rotten it is when everything you say and ask for, goes the opposite way. Hang in there, you can lean on us @ DLH. I hope and pray things will go a little easier, for you and Mom. If you don’t mind my asking, how are you feeling? I know you mentioned tired, I would be surprised if you were not feeling that, but stress comes in many forms. Please take a little time for you, if and when you are able.
~Char
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Just read this post! What a scary feeling, feeling like the rug can be pulled out from under you at any moment. Please, stay strong and stick to your guns! Thinking good thoughts and praying for you and your mother. xoxo Cindy
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Karen, I have been thinking of you and the meeting at your mom’s facility. Seems like the Ombudsman is involved and it has been helpful. Being on the same page is so important.
Char’s message to you is beautifully written as usual, and as usual I second everything she said.
You are such a kind daughter, wife and mother. Hugs to you, Joyce
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Hi Joyce! Thanks so much for thinking of me, I need all your positive energies possible these days. The mtg went well, but today was not a good day as you can see from my story to Char. But yes, the Ombudsman was definitely crucial and helped enormously. I reminded the doctor today on the phone that my mom is still young and active and you can’t always have 20 patients with dementia that are all going to behave the same. At the mtg, they started to say that a family member said my mom was yelling and screaming at her. I listened patiently and said “really, yelling and screaming?” and looked over at Jennifer, my Ombudsman, & she knew where I would be going with that. Then, I looked over at the daytime nurse who was in the mtg as well and asked her if she witnessed that or ever heard my mom yell or scream before? She shook her head no. My mother is non-verbal and cannot talk, she only makes a sound and it’s not loud. The conversation pretty much turned around quickly after that. But, I knew that any wrong move she makes, I’m going to hear about it, and that it will be made a big deal out of. I’m keeping as low a profile as possible with them though and just trying to sound helpful and concerned which I am of course – very, over her issues. All I can do for now…
Big hugs to you back Joyce, thanks for being such a great friend, hope all is well with you too.
I’ll keep you posted.
Karen
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Hi, Karen. Sadly, I am well aware of the ever-changing landscape of dementia. Her symptoms are always changing. Every few days there is a subtle change but every few weeks, there are major ones. Dianna is only 45 years old and the earlier the onset the quicker the progression. Her language is starting to go.
It’s amazing how your mother was still able to use her piano books and follow them! And to perfect and learn new pieces! One thing I learned about music is that it’s stored in more than one part of the brain. Dianna can sing any song and sing every word and note!She has a savant-like quality when it comes to music. Commercials, tv themes, new shows and old. New songs and old. She can’t really “learn” them in a conventional way and I am sure the words are meaningless but she sings them all. I can start a verse on any song and she will pick it up. Also, music triggers certain responses from her. Like radio theme songs of slogans on commercials.
As far as a skilled facility, with someone young like Dianna, it would not be a convential nursing home. We have several facilities here that specialize in dementias like hers. A few places that specifically have younger patients with FTD, Pick’s Disease etc. We are a long way from that at this point. My feeling about the medication is that I’m undecided on whether it’s such a terrible thing to medicate these symptoms occasionally (not all the time). I feel like sometimes she never has a moment’s peace and never lets herself fall asleep or even relax. As soon as she starts to doze, she starts her repetetive language thing or cursing or rhyming. Lately, one of the changes is she has a couple of hours of incessant behaviors pacing and opening and closing doors and wanting food and saying the same few sentences over and over again, then she crashes for awhile…it’s like she has to re-boot.
There is no way to change her diagnosis. They found no signs of AD in any of her tests and she has been studied by the NIH in Bethesda, Maryland. We’re kinda stuck with the diagnosis.
Just a caution on Seroquel. Every patient is different but Dianna’s reaction was horrible. While it did calm her down considerably, it also started her with new, much more agressive behaviors like hitting and punching (which was already an issue). At first we thought it was just another cycle of change. Then, one day, she picked up a glass of water and hurled it at her husband. He wasn’t hurt but the glass exploded on the granite countertop! Shards of glass and water EVERYWHERE! The next day, I told him to get the sheet that came with the medication. It said if you notice a marked change in behavior such as agression and violence to discontinue the med. He called her neruologist and he said stop the med. We lost a little bit of ground but she stopped being so angry and agressive after about two weeks. But there were some changes. Could have been a coincidence or could have been a result of the med. We will never know for sure. And it took a couple of weeks of her being on it before we realized there was such a huge difference.
I am glad you found someone to intervene on your mother’s behalf. I know how important it is to get in touch with the right people. That is a big source of my frustration. Her husband isn’t exactly “on it”. He is lost and overwhelmed and in denial. He is trying to care for his 45 year old wife and his 9 year old son and work full time and take care of the house. He brisles at anyone giving him advice because he fails to see that he is not the only one who is being affected by this disease. He doesn’t realize that it’s not happening to him…it’s happening to her! He’s always been a little on the selfish side and that makes him difficult to deal with. And the more care she requires (and I know I don’t have to tell you how much that is) the less he is accomplishing in taking care of his home and his child. We need help. He says he knows and he’s trying but if he was trying, we’d have help by now. Don’t get me wrong. Lots of people would just walk away (as your family has and some of hers also). She has a mother and three sisters. One sister comes on Wednesdays when her husband is off so that he can have a little down time. She has two very young children and works two jobs. The other has nothing to do with her at all because she can’t “handle” it. The third wants everyone to think she is helping and always wants credit for doing her “duty” as she puts it. Her mother lives with that sister and has basically raised her kids. Her mother doesn’t spend nearly enough time with her to understand what she needs. They act as “babysitters” for her-”watching” her when her husband or I or MY sister can’t be there. It’s all so crazy and I’ve been typing for so long that I don’t even know what I’m talking about anymore! Once I start, I can’t stop myself.
I wish you love, luck and peace on this difficult journey. Hope to talk again soon. Love, Cindy
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Hi Cindy, sorry, see I missed this response from you so I was writing and asking about things you’ve all ready wrote to me on. I wanted to double-check on the meds you mentioned Dianna was on before & I saw your new response here. I see that you guys have all ready tracked down the right facilities that would take her, & that is making me feel much better right away given all the trouble I’ve had in my area with that issue, so that’s excellent news that you know of the right places when the time comes. It sounds like her husband is trying to hang in there as long as he can in order to keep her in her own familiar surroundings as long as he possibly can and that’s what we did too, but we had caregivers full-time; it’s noble, but disconcerting since she’s having the violent tendencies with their young son in the house. I myself had a hard enough time accepting that it was time to place mom too and I felt guilt for doing it. I’m over that now, but it’s a natural feeling to experience. I see you’ve also experienced similar issues with some of the family members not helping or wanting to deal with it. You and I should get together and write a book! I’m very weary of the powerful anti-psychotics as well as my mom had the stroke from Seroquel before in the past over 5 years ago. Her psychiatrist is tapering her off of the Seroquel that they have her on now, thank goodness; but they have her on another drug that is in the anti-seizure category in order to try and slow her activity level down. I believe Seroquel is one of the older and more dangerous of the anti-psychotics supposedly. They have some newer ones Xelsias (name spelling unsure of?)and the other I can’t remember right now, but I can find out. They can all have side effects but the goal is to make the patient more calm and comfortable. They may have to build up in their systems for several weeks before you can determine if they’re helping or not. You would have to check with the doctors and pharmacists on that. I know the anti-depressants work that way, but the anti-psychotics may start working much faster. Try and talk her husband in to finding a good psychiatrist for her. I took my mom to a nuerologist too when she first moved here and that was the same thing she offered us as well was the Nemenda which was fine but my mom has had this for so long now those types of drugs aren’t going to be that helpful at this point. If Dianna is having violent tendencies, you want to try and suppress that behavior as soon as possible so it doesn’t get worse. Liken it to having an allergy to something and you take antihistamines regularly for an extended period of time to suppress the allergic reaction until it doesn’t happen anymore. It doesn’t necessarily mean once she goes on it, she would have to be on it forever. However, I do know that she can’t take any of these meds we’re talking about on an as needed basis here and there. She would have to be on a regular dose daily to benefit. And, you can administer extra doses as needed if she’s having a bad episode or day, PRN they refer to it as. I remember the caregivers would tell me that occasionally my mom would walk by and slap my father on the head as she was floating by. It never progressed any worse beyond that and I’ve never witnessed her do anything of the sort personally to him or anyone else, which tells me she outgrew that behavior and that was even not by being on any special meds other than Aricept. And yes, I have read that book you mentioned and recommended. I was able to get a copy for loan at one of the AD caregiver support group meetings I attended. I believe it stated in there that Nemenda was better than Aricept for treating FTD.
I was so delighted to hear the part about Dianna and her singing talents! It’s wonderful that she is doing that still and enjoying her singing. I know it’s just fascinating about that separate area of the brain and how it can still hang in there and not be affected as much by the disease process. Such a major blessing. I love the image in my mind of seeing the two of you singing together, how sweet is that!
Big hugs Cindy, Love, Karen
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Hi Again Karen,
Been thinking about you and wondering how things are going for you and your family.
Please let us know when you feel like writing, DLH.
~Char
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Dear Karen;
It sounds as though things are moved quickly since last week It appears you have a new hospice and some support as you are looking towards the future. I am sorry for your unpleasant experience with the first social worker. From what little you shared, I think you and your family are very fortunate they ‘cut her off”. The Social Worker should be the MOST responsive and concerned about your family. They clearly were not invested in their ‘mission’ and did not have the best interests of your family at heart. (I would question the ethics and the legalities of their discontinuing services, but filing a complaint takes time an energy most Caregivers do not have).
I have a suggestion for anyone who might be searching for a Hospice company. If you are visited by a Social Worker or Nurse who seems ‘too busy’ to make the calls necessary or seem disinterested in your family member or family; RUN!!!!! Run as fast as you can:) Tell them you “need to think about it” or you “will call them next week when you have decided”! Because they come to your home to discuss your needs and sign you up, you DO NOT need feel pressured to hire them! If your intuition is telling you ‘something doesn’t feel’ right, then listen! For those of you who have contracted with a hospice or home care agency, I would ask are they responsive to your concerns and needs? If you feel your loved one and family are not receiving what you need; please discuss this with the supervising team member! It is OK to advocate for what you want and need!
Keep taking care of your family AND yourself! Keep in touch! Lynn
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Dear Lynn, thank you so much for understanding and giving that advice to me and others on how to stay aware of some hospices and their ethics. That hospice totally blind-sided me when they cut us off. We had a really great CNA & a volunteer set up and working out wonderfully and then they pulled the rug out from under me. I really felt threatened by the social worker as well when she had made a few comments to me like how I couldn’t even run out to the neighbor’s house next door and leave her alone for even 15 minutes. The reality is my mother is 100 times safer at our home then she would be in any other facility and everyone knows that. Additionally, the nurse that came over with the first hospice org wouldn’t even try to take my mom’s vitals because she wouldn’t sit still, she just wanted to sit on the couch and talk with me petting my dog meanwhile I’m sitting there thinking about the 300 other things I need to be doing rather than relaxing there on the couch chatting it up. I’ve noticed there have been a few nurses that are like that around my mother that won’t even try to touch her whereas others just do it and get the job done. It’s not like my mother is trying to hit them or anything, after all she is a dementia patient, so she’s very fidgety. It just amazes me how some individuals seem to be in the wrong career. I took my mother to a geriatric doctor locally when I first moved her in with me a year ago and she was very hard to keep still in the waiting room, the waiting room that had zero people waiting in it by the way, and when we went back to the exam room and the “geriatric” doctor walked in the door as he was coming in he was all ready saying to me how he didn’t think he was going to be able to help me with my mother! My time is precious, so the first thing that rang into my mind was how I needed to cut my losses & get out of there ASAP so as not to waste another minute longer of my time and get his name off her insurance card as her primary physician even sooner. The next doctor I took her to it was like night and day, she was so helpful and easy and she and her staff treated my mother with dignity & respect. BYW, the nurse in the so-called “geriatric” doctor’s office told me that she couldn’t get blood drawn from her arm because of the “way she was” and there was never even any attempt by her to even try. I think she gave me an order to go get it drawn somewhere else and I didn’t even waste my breath telling her she had just been to a clinic and had it done 2 weeks before and the technician didn’t have a problem at all with her. I just wanted out of that pathetic office as soon as I could and was glad they showed their true colors right away so I could move on and find the right physician for her. And you were 100% right Lynn, I didn’t have the time or energy to pursue a complaint with the first hospice that didn’t work out, although I considered it and could have appealed them. I feel much better with my new social worker (we met again today) and she understands that for the short term my main objective is to obtain respite care whenever we need it and that I will need her support as our advocate even when we are going to be paying for it privately. I’ll be keeping my fingers crossed it works out this time! I’ll keep you posted!
Take care, Karen
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Karen,
thanks for the kind words. We are all in this game of life together and we need to be there for each other. This site has brough me incredible peace and comfort. I’m always here. May not have all the answers, but we can at least talk it thru. Keeping you and your family in my thought and prayers. Blessings-Susan
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Hi Again Karen,
Just re-read your story again and hoping you are doing better today. As caregiver to my husband and mom (she’s 90) I completely understand your feelings. Just know that I for one think you are very special, and admire you just for that alone. Hope your mom is doing well today, and please stay tuned here at DLH.
~Char
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Thank you Char! I happen to think you’re pretty amazing yourself! Thank you for asking about my mom, she is doing well. I hope your dear husband and mom are doing great too. How wonderful is that to still be blessed with your mom at your side.
I’ve been reading your comments throughout the site and have been enjoying your great sense of humor!
Karen
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Dear Karen;
I am so sorry for the constant stress you are feeling, and the ever-present worrying. From the ‘out-side’ looking in though, you said it the best in your last paragraph—“I’ve done my best”. Might I suggest making this your mantra to think and maybe chant when the worrying starts? Maybe tape this phrase on sticky notes in your areas of your home? You, your husband and son sound incredibly compassionate and giving! While you do not know what your future holds, you hopefully feel secure the four of you will face it together.
When working with patients and families facing a chronic/terminal illness, there have been times I must control my disbelief. Sometimes I (yes, the professional) even feel a little anger with family members who refuse to engage or support, either emotionally or financially. I have found there may be many different reasons; financial, grief, weakness, selfishness, and many times fear. Yet I have found when the journey is over, regardless of the reason, many will feel regret, sorrow, and guilt.
I am sorry your extended family chose to disengage. Yet, when-ever you and your mother’s journey is over, the grief finally softens a little, you will eventually be at peace knowing you HAVE done your best! There will be no words left unspoken and hopefully no “what if’s”!
Might I suggest signing your mother up for Medicaid, but NOT in order to put her in a nursing home! Once she is approved you may be able to choose the services you want at any given time. There may be some in-home services so you have some respite time for yourself or to spend with your family. It may also be nice for your mother to see and interact with a new face. I would also suggest contacting senior citizens agencies and organizations in your area. They will know of any other support which might be offered by volunteers, other agencies, and churches in the community. Please do not forget, we are here to support you so you may continue to be the wonderful Caregiver you are! Take care and please keep in touch!
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Dear Lynn, thanks for the great advice and your kind and encouraging words. My problem with doing my best is even though I try, I sometimes feel like I come up short or sometimes I feel “our best” isn’t good enough. Today started off with some good news with a hospice org calling me and telling me they were able to accept my mother. When I first moved my mom in with me over a year ago, I had signed her up with a hospice because she had it in Florida for a few months before I moved her here with me in NC. I didn’t know much about it, other than that nurses were checking up on her occasionally. When I signed her up here, I learned there were respite benefits available as well. The social worker was not very positive about me getting her those benefits though and I had this feeling she just didn’t want to be bothered with having to make too many phone calls, so when I did ask for her to find me a respite stay for her, they instead came over the very next day cutting her off using what they felt was her current condition as their excuse but at the same time encouraging me to try another hospice which I didn’t do b/c after all that I felt it was more trouble than it was worth.
A very nice and helpful lady who works for the nursing home she rehabbed at recently called me telling me about a hospice and could she have them contact me for help? So I said sure and 3 reps came over on Monday but they weren’t sure they could take her and the social worker told me they could only use respite with certain nursing homes they were contracted with in the area and they didn’t have locked units and so forth so it didn’t appear to me again to look encouraging that they could help me with that part. So, I spent the night researching other local hospices & thinking about it and wondering if I needed to just go down a list of hospices one by one calling them all up and asking which one would be best suited for helping us with the respite benefit on the next day. But today, they called and said they contacted her doctor and she approved the hospice so they could take her and when I questioned the respite part, they said they also had many contracted nursing homes outside the area they could access as well as long as I didn’t mind taking her out of the area. Well, when we want to go out of town and don’t know what to do with her, we’d be happy to take her to the next state over if that’s what it would take to give us some relief as long as it’s the right place for her and she would be safe there. So anyways I agreed that sounded good and accepted their services and they said they could start her today and we agreed to meet at 4:00.
After that call, I was giving her a shower and when she got out I noticed blood and then saw she had a large bump on the front of her shin that was oozing blood. I became very alarmed b/c she has a history of blood clots in her legs. The first thing that came to mind was that I should maybe call 911 and have an ambulance take her to the hospital, but I called the hospice instead and they sent a nurse over within the hour. It turned out it was just a bad bump that had filled with blood, but it was not a clot the nurses felt. So right away, we were able to benefit signing on with them on Day 1 coincidentally I’ll add.
So, my hope is that this hospice works out and will be beneficial in helping me by using their social worker as an advocate on our behalf to find her respite stays when we need them. It will be a comfort as well to know they will help me figure out what to do if I get sick or injured and can’t take care of her suddenly. My husband has often worried about this as he would not know what to do in that event either.
As I’m writing this to you at 1:25 AM, I can hear our buzzer going off downstairs telling me she is going in and out of the bathroom, so I’m going to need to go down there and check on her. It’s unusual for her to get up at night like this so that’s why I’m wondering what’s up. I may have a lot of work on my hands to do once I go down there. I’ve had a busy last 2 days with her. I haven’t got anything else done these last 2 days that I’ve needed to do. I sit at my computer to relax and chill out when I need some down time, so DLH has been a real comfort to me these past few days. Buzzer again, 3rd trip in; I better go check things out…I’m back, all is – I just heard the buzzer go off again! She was wet and wanted to be changed but she was back covered up in her bed when I came back up. I hope she doesn’t have a bladder infection, something is definitely bothering her, the buzzer keeps going off as I write; she is going in and out of the bathroom constantly. I’m going to have her urine checked when they come back on Monday, or sooner if symptoms get worse before then.
Yes, Jennifer, my new social worker, said she will help me look into Medicaid options although she mentioned her ss check is probably too much to qualify her for the Medicaid in-home benefit but I don’t know maybe there are still other benefits she or I aren’t aware of she could be eligible for still if we get her qualified in the future. I would like to be able to hire a good elder care attorney but not sure that will be cost effective yet.
Well the buzzer is still going off, so I will go make another trip down there before I put myelf to bed. We are on a bad schedule b/c now I am giving her alone time in the AM’s to try and move her bowels as she won’t do it with me watching over her and then it alleviates me from having to clean up all day long too. But something is definitely bothering her tonight, this is not normal for her to be up like this.
Well, that’s my story with the hospice and respite struggles I have constantly. I really hope this new one can come through for me. Please keep the ideas coming Lynn, every bit does help. I’ll stay in touch, take good care,
Smiles, Karen
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Hi Karen, You are really something else! Your ability to do ALL you do, and still help others, by letting us know how the system, “works”, is amazing. My hope/prayer for you today, is that your new connections work out, you get some “me” time, and your mom gets good professional help, that all will benefit fom. DLH is a God send as it lets us, vent, learn and smile anytime of the day or nite. All my best and hoping your mom is feeling better today.
~Char
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Dear Karen, I’m so glad to hear that hospice was so helpful to you, so quickly. It will be good for you to feel you and your husband have some back-up. ~ Jean
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Thanks Jean, for sure, and I’m keeping my fingers crossed they can be my advocate for getting her into respite stays for long weekends when we need them since I’ve had such a diffucult time on my own trying to find the right one to take her, part of our short-term goals for now, especially with summer upon us now.
Karen
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Dear Karen, I’m so glad you decided to share your story with us – when we first “talked” so many months ago, I was so impressed with the way you and your husband and son have worked to accommodate your mother, and all you continue to do, even in the face of adversity. I’m sorry to hear that things haven’t changed with your family. I want you to be able to do everything that will make you feel fulfilled and happy and whole, including care for your mother and find a great job, maybe even have a second child. I hope the right doors will open soon for you and your great, supportive husband. ~ Jean
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Hi Jean, I appreciate the positive feedback from you, Char, Lynn and Susan. It really does help me to take a deep breath and realize there are so many others out there who probably have their work cut out even more so than I do and have been at it for a much longer time too. I think I’m finally starting to get over that feeling of “being overwhelmed” initiation phase for lack of a better description of being a caregiver while slowly but surely coming more to grips with it through acceptance knowing my sweet mom is so much better off with me than somewhere else right now. I still feel in over my head with regard to trying to get her affairs in order though, but my husband and I are going to work through it hopefully with the right guidance. The changes we’ve made in the house since she was in the temporary rehab stay are so far working out better. The stay was not without its dangers though while she was gone. Talk about on faith and a prayer, I had to do that. She fell out of the bed while she was in the hospital on the side of her face from the heavy sedation they had her under to keep her in the bed. It’s a miracle she didn’t crack her head or face open; she was badly bruised around her eye and temple from the fall. And while at the nursing home stay, she lost weight when if anything, she should have gained since they feed them frequently and so many calories supposedly. At my house, she eats and drinks anything I put in front of her, so when they told me she had lost weight, I knew something wasn’t right. The first day back here, sure enough, she didn’t finish her big breakfast I made her leaving most of it on the plate and by the door where she leaves it for me to take upstairs. She also seemed to have stomach aches and bowel issues which I suspected was from all the stool softeners and such they were giving her every day while there. It lasted a day like that and thankfully after her stomach cleared out and calmed down, she was able to resume her old appetite again and she is eating like a champ again ever since. But she probably dropped from 120+ down to less than 110 which she didn’t need to do. Her body cannot afford any more weight loss. They had her in a facility that was too far away from me (75 minutes, one-way) to supervise what was going on better. So, I had that guilt to deal with.
When I see other mothers and daughters enjoying each other, shopping, planning, laughing; I feel envious and sad that she and I can’t do those things anymore. Some days I think I should just take her to JC Penney’s to walk around but I know she’ll be grabbing at all the clothes and people will be staring at me trying to control her. She likes to get in the car because she feels like she’s going to go somewhere like back to Florida maybe, but if I try and take her out to walk around somewhere, she just wants to get back in the car.
I miss her. She was my best friend but she was also a no nonsense type of individual and she raised me with morals and a strong sense of the importance of family. She always looked great too, never going out of the house without her lipstick. She didn’t have to try to be classy, she just was and not a pretentious person either. People loved her. She was always hired on the spot when she interviewed for jobs and held numerous management positions over her work career. She was very articulate and had a great speaking voice and now she’s been reduced to only being able to say “paperwork”. My brother ran into a woman last year sometime that recognized his last name asking if he was related to my mother. When he said yes, she told him how many years back when she had first got into the real estate business by being a hostess, the other sales people had treated her so horribly that she had wanted to quit, with the exception of my mom who was also there & took her under her wing and helped mentor her by taking the time to show her the ropes. She couldn’t say enough nice things about our mom how beautiful she was, how nice, how much she looked up to her, etc. She had ended up staying in the business obviously and so many years later to this day is still doing it and she said she always felt grateful to my mom who had showed her that kindness and therefore she had hung in there & didn’t end up quitting. Another reminder for my brother & I on what a special mom we have. I hope I am doing right by her these days because she deserves it.
Your positive thoughts and well wishes are so appreciated Jean. It was so sweet of you to give me encouragement not to forget about my own dreams still and thank you for acknowledging my special guys as well. I am so lucky and blessed in so many ways regardless of what I may or may not have in the future.
“Don’t Lose Heart” is an absolute comfort and place of hope for me. The other caregiver stories are a testament to the human spirit and validate the wealth of kindness and love that exists in the world. My mother-in-law always tells me how I will be rewarded in heaven one day and I tell her I don’t know about that! I think I’m more worried about my mom being upset with me still for too many showers! (Her least favorite thing to do these days!)
Smiles, Karen
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Karen, your story is all to familiar to me. We have a similar situation in our family. We live din NJ and my mother’s parents visited us twice a year; when they got too old to make the trip from Corning, NY, it was decided that we would move up there so mom could help with them. Mind you, she had a twin sister who lived 5 miles from them and another sister who lived 30 miles from them, but they were of no help, except when they passed and then they stood up and took over like they were the ones who did it all these years. My mother was thrown to the side. We have a similar situation now that mom lives with my husband and me. I have sisters who are only interested in getting from mom what they can. I do not and cannot rely on them for any type of help. Financially we all live paycheck to paycheck, so there is no money. Mom has lived with us for nearly 15 years and my mother-in=law lived with us for 10 years before she passed. I totally understand how you are feeling. I wish there were words to help bring you peace and comfort. Know that we are all here for you. I have been very fortunate to have a wonderful support system in my girlfriends and my mother is still alert, and at age 80, works full time as a cashier at a grocery store. But she is slowly slipping away and not sure how much longer she can work or drive. I expect when she can’t, the end will come quickly. I too am like you, I know when I put my head on my pillow at night, I have done everything in my power to make sure she is safe, loved and happy. That is the very least I can do for her. If you ever feel like just talking and venting, please email me at the link to the left of this page. Please know you are not alone. And this site may not have all the answers, but at least we can share with you and you can lean on us.
Blessings! Susan
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Hi Susan, it is a pleasure to hear from you, thank you for reaching out to me & for your understanding words to me. I can totally relate to your feelings as well. You and your husband are compassionate people to take in your parents and this separates you from your other family members who don’t want to be bothered. I can hear the love you have for your mom in your reply and it is a beautiful thing. I know it is still a tough pill to swallow though when you suddenly find yourself and your mother being ignored by other family members or taken advantage of; but yes, at the end of the day, we can sleep at night knowing that we are so fortunate that we can have the ability to help our moms and emotionally handle it as apparently others cannot. I admit I have my moments when I say to myself “I can’t do this anymore” but it passes quickly and I remind myself how lucky I am to be able to help the person who brought me into this world and what an honor and privilege it is to help my mom now who cared for me for so long herself.
And thanks for the invitation for me to vent some more, because I always feel the need to do that these days! I definitely plan to stay in touch!
Your mom sounds like she is an incredible lady and that is so great how she likes to stay busy and productive in her upper years, God Bless your dear mom. I pray she has many more wonderful years ahead of her.
Karen
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Dear Karen,
You are a worrier like me and that in itself is stressful. So glad you found this site as
the DLH caregivers can offer you advice from their own varied experiences.
In the meantime, I would like to welcome you into Jean’s little blog; rest assured you will be comforted here. Just listening to Dan’s songs gives me comfort, in my most stressed out times. He had/has a magic, like no other. Hoping to hear from you again, and remember don’t lose heart.
~Char.
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Dear Char, thank you for your kind words and warm welcome to DLH. I definitely feel comforted here and it is so nice to also be able to converse with others who also appreciate Dan’s music as well. Before Jean opened this wonderful site, I often wished I belonged to a club or group locally or online that shared my enthusiasm for his incredible song and now I feel that has been fulfilled as well. DLH is like a place of refuge for me and I promise to stay in touch. Karen
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