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 Need Support and Guidance 
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Joined: Mon Nov 01, 2010 2:50 pm
Posts: 15
Post Need Support and Guidance
I read here frequently and haven't posted in months, but I really just need all of your support, my Mom has not been officially diagnosed with LBD but everything points to it. She had suffered from Major Depression for years before things got out of control. Anyway, she is at the point now where she is sleeping most of the time. She goes to bed between 10 and 11pm but is really not that awake, she doses on and off most of the evening. She is now woken up at 9 am for meds but the aides get her back up at 10 or 10:30 for breakfast...mind you she wouldn't wake up on her own to eat. She is needing to be fed breakfast, and it takes her an hour to eat. Sometimes she can do it, other times the aides help her because she has trouble..its like she falls asleep in between bites. If you didn't make her, I don't think she would eat. After Breakfast they get her washed up, she cannot do any Daily Living Skills on her own. Total dependence on someone...She is having a lot of trouble walking, like her legs get stuck. Very weak...She sits in recliner chair sleeping until woken up for lunch. Most of the time sleeping but if not sleeping eyes shut. There are times when she is unresponsive when she is sleeping. you cannot wake her....I don't know what that is or why it happens. But its concerning to me. I could kiss her hello and goodbye, say Hi Mom ten times and she won't even flinch. Goes back to sleep after lunch and sleeps or has eyes closed until dinner. After dinner she doses again on and off. Maybe for an hour or so eyes may be open, but seems to be confused, like where am I and when am I going home and where will I sleep tonight. Accidents are multiple times a day...its like she doesn't even know when she has to go, she is totally in depends. My dad is caring for her at home with aides. He is suffering so much. He looks terrible, he is not a natural caregiver, never had to care for anyone before, he is doing the best he can but out of guilt he is keeping her in the house to be cared for, but I feel it is at a point where it may be beyond is efforts. It is just that it is almost killing him in the process. He is having major stomach issues which I would guess is due to stress. He never gets away from this, he is consumed by it and even when he goes out and does his own thing, he is clearly not enjoying himself. Nothing makes him happy and my fear is I will lose him before her. There is no convincing him any other way...but its killing him. He is very irrational most of the time. I am almost worried that he is having some memory, mood issues himself, many say due to the stress of care taking but I'm not sure. I live very close to them so I am there several times a week to be of support and spend some time there. It is very difficult to see my Mom like this. She doesn't really communicate except when confused. She is losing weight, not sure how much but I can see it almost weekly that she looks much thinner. She is hardly eating or drinking. And can you believe her psychiatrist said last August that she was Beginning to Mid stage dementia/alz? I sure think he got it wrong! She knows who most of us are....she is mainly confused with her surroundings. Sometimes she calls my father Dad. I am at the point that I feel her passing would be such a blessing. She has no quality of life, just sleeping all the time and Doctors will not change her medication. She will not improve from this point, she has been like this for a long time. But I feel like we are stuck in limbo, like life is on hold waiting for something to happen. Its a daily struggle. I can't even enjoy some really great things in my own life because this is on my mind all the time.

Thank you for listening....opinions are welcome!


Mon May 21, 2012 9:02 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Need Support and Guidance
Hi Tara - it sure does sound like the stress of CGing is killing your father, and that is unfortunately what often happens. It also sounds like your mother may be eligible for hospice help, which would take some of the burden off your dad and give other people some of the responsibility for taking care of your mom. With the amount of sleeping she's doing, her lack of wanting to eat and weight loss, I'd say she is likely hospice-eligible.

Can you get a social worker or someone involved who can make an accurate assessment of where your mom is right now, and who can work with your dad about the need for him to take care of himself? It sounds like her state of health is way beyond what one person can do even with help from you. If he insists on keeping her at home, having aides come in for several hours a day or night, minimally, may help take some of the burden off him and you.

You also need to take care of yourself because you can't afford to get sick or have a lifelong stress-related condition.

I'd recommend calling TODAY to get someone in to help figure out a better situation for all of you. Good luck and keep us posted. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon May 21, 2012 9:42 am
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Joined: Mon Nov 01, 2010 2:50 pm
Posts: 15
Post Re: Need Support and Guidance
He does have aides coming in for most of the day, but he is still always around...maybe just in the next room. He goes out and golfs and bowls, but he is there a lot and he is in and out of the room a lot...the aides are kind of companions who have now had to take care of a lot more. They are not skilled nurses of any kind. But I am short in height, the aides are shorter than me and sometimes they can't even manage her alone for walking, especially when she gets "stuck". She also leans forward in stooped posture and she falls frequently. You would think the aides would give him a sense of respite, but its like he never fully gets away from it all and when he is out, I've been told he really does not seem to be enjoying what he is doing. Its a shame because he expresses how much he wants to live and enjoy life but he is so depressed and consumed with this that its sucking him dry of any kind of life. The grandchildren don't even bring a smile to his face anymore. Its so upsetting. I don't even know how to begin enquiring about hospice....wouldn't her doctor suggest this option? She is community medicaid approved, he is just waiting to find out how many aide hours will be covered...but I personally feel at this point hospice could be there because all she does is sleep and I see her losing so much weight, she only moves around to get up for a meal, depending on what it is. I almost think its torture to make her sit at a table, her head just hangs down.


Mon May 21, 2012 10:06 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Need Support and Guidance
Tara,
I have no opinions to offer for this sad situation your family is in except to say that it's very common, and often we adult children are waiting for a crisis to occur before we can step in and "do the right thing."
Robin


Mon May 21, 2012 1:43 pm
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: Need Support and Guidance
I"m so sorry you're at this point, Tara. We are almost there with my Mom, who took a nosedive about 3 weeks ago. My Dad does not seem to be doing as bad as yours, but he is such an introvert it is hard to know for sure. Is your dad going to his physician? I did notice that after my dad went to his doctor last fall, he made a point of calling to find out when the holiday luncheon at his former job was going to be and attended it. The fact that he called the day he went to the doc made me think his physician urged him to get involved in outside activities. Might your dad benefit from an antidepressant? Is it crossing a boundary to tell your father's doctor of your concerns? I don't know.
We have been urged to call in hospice, and we'll be talking about that and other things wednesday (my sister, my dad, and I in a long overdue conversation). I wish you the best in caring for your folks. They are blessed to have you and your love in their lives. Prayers and hugs for all of you.

_________________
Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Mon May 21, 2012 4:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Need Support and Guidance
Sometimes doctors suggest a hospice eval., sometimes you have to request it. If your mom is not being weighed regularly, and I'm guessing that is NOT happening, the dr. has no way of knowing about her weight loss and that can often be the criterion that will make the case for "failure to thrive" and thus allow the person to be hospice-eligible. Just having dementia, no matter how bad it is, does not seem to make a person hospice-eligible. If there's a way to guess at a previous weight and get her on a scale now, that may be a big help to you. If she is in the final stage, forcing her to eat (if that's what's happening) is really not doing her any good. In the end stage people's bodies do not need and have a hard time processing food, drink & meds.
If I were where you all are now, I'd request a hospice eval. ASAP - the worst that can happen is they say she's not ready for hospice yet, and they can come back and re-evaluate later. Good luck, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue May 22, 2012 8:54 am
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Joined: Mon Nov 01, 2010 2:50 pm
Posts: 15
Post Re: Need Support and Guidance
I have thought of calling his doctor and explaining how much of a toll this is taking on him...my father has chronic stomach issues from the stress...and some days he just looks plain awful. I know he is not sleeping well at all, he's not getting the proper rest. When he gets out, he's not really enjoying what he's doing, he's just going through the motions. But then, like I read on here all the time, today didn't sound like such a bad day for her. Today she was able to feed herself according to one of the aides, every day is different, but I do know all she does is sleep. Very rarely are her eyes open. There are periods during that time of sleeping where it almost looks like she stops breathing, then her breathing resumes. I saw this and the aide saw it. Anyone know what that is? And also there are times when she is sleeping that you cannot wake her up...I have been there with my 5 year old and we are all talking and she doesn't flinch. Then I kiss her hello or goodbye and again she doesn't flinch. Its weird. Has anyone experienced that with their loved ones?

I think my Dad's doctor is going to look at this like "what choice does he have but to care for her" since my father has expressed to her doctors and even my brother and I that he will not put her in a nursing home until she doesn't know any of us. I keep telling him that may never happen, she may always know us. But all the other stuff that is sometimes unmanageable is just as bad.


Tue May 22, 2012 10:43 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Need Support and Guidance
Tara, we have very similar situations, except that last September, my dad very reluctantly put my mom in a nearby assisted living facility for dementia patients. He is almost 79, has had major heart surgery and other physical ailments, and he can't lift her anymore. If he tries to catch her when she falls, they both go down. When she began to leave the house in the middle of the night, he knew he couldn't keep her safe, especially since he's hard of hearing. He still feels terrible about moving her there and wants to move her home, but I've held him off so far. Until recently, he visited her 3 times a day--every meal and then put her to bed at night after the evening meal. He now usually just goes after dinner and puts her to bed. He reduced the amount of time he spent there when several people, including me, told him it would be better for his physical and mental health if he'd go just once a day. I had a really honest conversation with him and told him how his stress was negatively affecting me and that I don't want to lose both of them at the same time. I told him Mom could probably sense his anxiety, too, and I wanted her time with him to be restful, not stressful. We had a good cry together, and I think it was healing for both of us. I've found the most important thing is to just listen to him and keep telling him he made the right decision and that I can see how much he loves her.

As far as your mom's condition, she sounds exactly like my mom--not eating, sleeping all the time--and my mom is on hospice. Her doctor referred her. She's only recently begun to lose weight as she's now on a completely pureed diet which she only sometimes eats. The doctor referred her because she thought she had pneumonia and wouldn't make it, but she improved. We think she still has it, though. Her symptoms got better, but now they're starting to come back. Her lungs never did completely clear up. So...who knows...? I know what you mean by feeling like you're in limbo. I feel like my own life is on hold in a lot of ways. It's hard to plan anything too far ahead. I see her 2-3 times a week, but she rarely shows any acknowledgement that I'm there. I've found that if I put my face right in front of hers, just a few inches away, I get more response. My 9-year-old has learned the same trick, and sometimes he can get the slightest smile from her.


Wed May 23, 2012 12:23 am
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: Need Support and Guidance
Tara,
I am also in the same situation. We know my mom does not have much time left, and got the hospice referral from her doctor. My dad has been caring for her, and has repeatedly refused to put her in a facility. I can hear the sadness in his voice, and he also gets confused and overwhelmed with all the information that he is given.

I would call hospice ASAP. In my area, when the doctor makes the referral, they evaluate in 1-2 days. Try and be there, as your dad will need your emotional support. Hospice can greatly help with support for him as well. Their goal is comfort measures for the patient, and support for the whole family which your I'm sure your dad can benefit from.

~Heidi


Thu May 24, 2012 6:59 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Need Support and Guidance
Dear Tara

I am going to chime in on this one as I see most people that replied to you are children of a parent with this illness. I am /was a spouse of someone with LBD and Your Dad seems to be doing what a spouse would do , even if your Mom was in a Nursing home I am willing to bet he would still be there with her as much. It is just different with a spouse, there is a different kind of connection that 2 people have, I am glad that he has some hands on help and that you are able to be supportive for him because you are close in distance !

_________________
Irene Selak


Fri May 25, 2012 3:56 pm
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Joined: Thu Dec 08, 2011 5:23 pm
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Post Re: Need Support and Guidance
Tara, your mom sounds almost exactly like mine. Mom had LBD for 6-7 years, but began a downward turn at the end of Feb. sleeping or eyes closed almost all the time and hard to wake up. She still knew everyone when she did wake up (I could tell by her expression she knew us, but she wasn't able to communicate). She ate and drank very little and refused her meds by either throwing them away or spitting them out. She lost 25 pounds in one month and seemed to shrink before my eyes. When it became apparent that she was not going to pull out of this, I asked her doctor to request a hospice evaluation and they came out the very next day. Needless to say, she qualified.

As the days wore on, she had to have two people help her to the bathroom but she also had to be in Depends because sometimes she just slept through. Finally, she became too weak to get up at all and had to be bathed in the bed.

Even though your dad has aides, hospice can do more and he will have a nurse coming in to see how she's doing, answer questions, etc., so I agree with the others that I would ask her doctor right away about getting an eval. They will also tell you, as someone else mentioned, that food and meds are not necessarily the best thing for your mom if she has indeed begun the dying process. Mom was offered food and drink at every meal (when we could get her to wake up), but we let her decide whether she wanted anything and occasionally she did eat a couple of bites. If she refused to get up, we let her sleep. She seemed to enjoy cold water more than anything and would drink a few sips from time to time even if she didn't eat anything. She lasted a few days over two full months once she started sleeping a lot and not eating much. She left us on May 4th.

Irene is right - there's a different connection between spouses than we children share with our parents. Your dad is probably going to do whatever he has to do in spite of the fact that it's affecting his mental, emotional and physical health. Just continue to help him as much as possible. If he wants to keep her at home, support that decision. If he decides it's more than he can handle and places her somewhere, support that decision. Sometimes, placing a loved one is the absolute best and most loving thing you can do for them, but it's also one of the hardest things for the caregiver to do. There is no getting around the fact that this disease takes a huge toll on everyone, some more than others, but no caregiver is unaffected - even if their loved one is in an ALF or nursing home.

My heart goes out to you, daughter, and I wish the very best for all of you.
Diann


Sat May 26, 2012 10:16 pm
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Joined: Tue Sep 13, 2011 1:50 pm
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Post Re: Need Support and Guidance
Tara,

My wife, Mary, had been diagnosed with LBD last Aug 2011. It took us 3 years, 2 psychiatrists and 3 neurologists to get the final diagnoses. Her current symptoms are very similar to your mom's, except for the constant sleeping (right now) that you mom is experiencing. I care for her at home now, but when she was at an institution for 2 months last Sep/Oct (for rehab from a fall), she was sleeping a lot and dazed.

She was initially on Seraquel, but it was not working well for her. She's now been on Depakote since October last year, and when we got her home we began adjusting the doses. We're giving her slightly less than what the nursing home was giving her, and now she doesn't sleep all the time, or as much.

However, now that she's more awake other issues surface. For example, even though she can't walk by herself (she doesn't remember she can't walk) she is constantly geting up and down all day long, and into the night, before finally settling down around midnight. She just walks in circles, stops, looks at me and cries "I don't know what I should do". Most of the time I can't understand what she's saying so I am always asking her 'yes' or 'no' questions. Most of the time when clear sentences do come out it's 'take me home' or 'can I see the baby'. I remind her she is home, the kids grew up, and then she cries. Sometimes, when I'm telling the Care Giver what to expect, my wife gets angry with me and starts punching me. I try to back away, then she starts crying 'don't leave me'. So I hug her and comfort her.

Like your mom, my wife can not do anything herself, and I mean anything. She has lost a lot of weight in the past 2 yrs, down to 100 lbs. Her appetite is good, but she just doesn't eat enough or all we want her to.

Fortunately, I have a live-in professional care giver 24x7. I still work, running my business from home, with my adult son as a partner, who also helps me with his mom. Between this and my brethren at church I do have a lot of support - I've been extremely blessed. But even with this support I am still overwhelmed - LDB is devastating and life changing.

So, as you already know, it is extremely important for your dad to get as much help as you can get for him. Someone already said it, and it's true - the spouse is affected in a different way than the children, not to lessen the hardship on the children by any means. To see my wife like this, and trying to remember what life was like before - I just can't express it. And, like your father I do not want to put my wife in a nursing home. I do understand it may come down to the fact I may not have a choice some day.

Her constant confusion, delusions & hallucinations, crying for me to help her, struggling with her mood changea - it's just overwhelming. And there lies-in our struggle, our stress, as a husband who feels totally incompetent because I can no longer provide her the comfort and joy I once did - back when I took so many things for granted.

I've been following posts in LBDA for several months, but this is the first time I've commented. It's because your mom's symptoms are almost exactly like my wife's and I know what your father (the loving and caring husband) is going through. As I read your post I couldn't stop my tears - my heart goes out to you and your dad.

I hope this has been helpful, I know it has been for me, just by getting my words down on paper.

You're in my prayers.

-DDG


Sat May 26, 2012 10:28 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Need Support and Guidance
Prayers for you and your family, Tara. And Irene is right--when it is your spouse it is different.
Hugs,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat May 26, 2012 11:40 pm
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Joined: Mon Nov 01, 2010 2:50 pm
Posts: 15
Post Re: Need Support and Guidance
I thank you for all who commented. Hearing how6you have handled things like we are going through help. It helps to know we are not alone. I know how devastating it must be for my Dad. Its just so frustrating to me that he is a very stubborn man and won't let me help with more. Since I last wrote, she is now sleeping a lot of the day and then at night, the little she is awake, she is very confused. This past Tuesday was my Dad's birthday, so my husband, kids and I took him out for dinner and then back to his house for cake. He told me today that she was so confused when we left. Too many people I guess, but I had to do that for my Dad, he needed to feel special for a day. This is just killing him, he is so extremely stressed. Even the financial stress is killing him. It such a shame, people are never prepared enough for what life may throw at them.

I have a lot of good things coming up in the life of my kids, Proms, High School Graduation, Sweet 16, and I miss my Mom, I want so bad for her to be a part of it all, my children were the apple of her eye. My two older daughters had the best years with her...my 5 year old doesn't know her so well. I think sometimes my Mom scares my little one. But she would be so proud of my girls. She is part of the reason I have such great kids, she raised my brother and I very well. I learned to be a good mom from her. I just miss her so.

Thanks for listening.


Thu May 31, 2012 10:07 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Need Support and Guidance
DDG,
I just wanted to welcome you to the forum and I am glad you have been reading for some time and I hope your visits here are helpful in letting you know you aren't alone dealing with this illness. You did mention in your post that you have adjusted your wife's depakote but she is at times very agitated, perhaps this was the reason the dose was slightly higher at the rehab, we often find with medications in this illness it is often a trade off, I too had to deal with a husband who couldn't walk on his own but couldn't remember that so we also dealt with many falls because we just can't be there every second of the day.
Good Luck !

_________________
Irene Selak


Thu May 31, 2012 10:22 pm
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