caregivers for Alzheimers patients

How do you continue to keep your loved one home when the challenges get harder and you continue to be the main caregiver with little help from family.

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PRAY! PRAY! and PRAY some more! Call your AREA Council on Aging. They may be able to help get you some relief.

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From My Journal, a page from 2 years ago when I went to TN to care for mom and give my sister a much needed break to spend the Holidays with her family.... I wrote everything down so below is just a few bullet points. Now mom is in a facility... final stages of 7 which is that her face is frozen, she can't smile, can't swallow now... they found 3 days of food packed in her mouth, I never knew it would be so hard to die. But if you want to take a few minute to read just a small portion of my care-giving journal from my time taking care of her... you might find out what is in store, especially trying to keep your loved one in your home... it's impossible if they out this desease. Keep in mind, if you read this that mom was able to talk in December of 2010, she could walk then too. I have pages of detail so if you feel you want to read more of what it takes, I will post or send you my journal pages... it's a raw and hard truth though.

Read Below - It's Christmas 2010 to New Year 2011:

It’s like being a mom again; only when they are 18 months and you pick up after them after every single meal as well as prepare it and potty-train; with someone at Phyllis’ stage; they will never progress – only recess. They do not learn, do not play, does not speak unless engaged. It boggles the mind to me. I have found a level of patience I didn’t know I had. It’s not her fault.

As mom is now in bed, I have been thinking about what it takes to care for her on a continued basis:

• You can NEVER leave a door leading out of the house open. Not for a second, cuz that will be the second she gets out.
• My sister and brother-in-law have locks in the garage, but have been locked out before – even by deadbolt; which you would think mom wouldn’t have a clue on how to use.
• You can NEVER leave any kind of food on the counter; she acts like she has never eaten. I have caught her rifling through drawers looking “for a knife” to cut a pear!
• In giving her a shower; it’s like giving an infant a bath. You can never leave her alone for a second. You must remember all her clothes, towels – everything because you can’t let her “sit here a minute”; it’s dangerous for her.
• She will never ask to eat, drink, go to the bathroom, cut a sandwich or put shoes on.
• When you ask her or demand for her to go to the bathroom; you need to watch her. She will walk in, turn around and walk out without ever sitting on the toilet. You can go check on her after a few minutes only to find her sitting on top of the toilet seat with no clue as to why she is in there.
• She will never wash her hands on her own – NEVER.
• She will wander, so if there is a room she is not to go into, it has to stay closed and/or locked if you leave.
• You can NEVER leave a door unlocked even when IN the house; in a minute she could walk out of it if you’re…..say; going to the bathroom yourself.
• She has to be situated and settled in order for you to have time for yourself, to take a shower yourself, to work on the computer, anything. She must be eating her lunch, watching the TV, listening to the radio.

There’s more, I can’t think of everything, I write this down as I remember how much extra time it took today to get more fire wood from the wagon to the house and then more into the wagon. The constant thought that she might get out if I don’t remember every move I make; makes every task that more daunting.

It’s Friday and I get the “why am I here?” question first thing this morning. “How did I get here?” When told that she does not go to the bathroom on her own, her reply is... “I don’t?”

I try, when I get her up to get her straight – do not pass go – on the toilet, so the urine does not run down her legs. I I'mf lucky today, her bed-pad is not wet.

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Oh my God - how brave of you to share this very personal journal, it's a brutal reminder of just how cruel this disease can become. I pray that we all have strength to get through each day - each challenge. I think the saddest thing is when you said they don't progress, don't learn - that is the hard truth, it just gets worse. God, give us strength & patience to endure.

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To cats07, I think at some point you have to determine if it is safe for your loved one to be at home, and also decide if you are able to give them the care they deserve. As caregivers, especially the primary caregiver, you have to set limits and boundaries for yourself, as hard as it may be. You need a respite from time to time to refresh yourself, if you don't get it and wear yourself then who will care for your loved one? If you don't have family support, perhaps you can find support from a local church or Department on Aging. There are also Adult Daycare Centers in some areas that you might consider trying. I went through this with my dad, my sisters and I kept him at home as long as we could, but when it became more than we could handle we had to make that hard decision to transition him to a nursing home. He did not have dementia, which made it a bit easier because he totally understood, but he had several falls in the house and had become incontinent. We are now facing this dilemma with my husband's mother, she has dementia and really needs 24 hour care. We have engaged caregivers to help with her care, but at some point that decision will have to be made. My advice is to keep him/her at home only as long as it is safe for them and doable for you - when it's time to consider alternative living arrangements you will be able to do it with the knowledge that you did all you could. Don't let anyone make you think you are making the wrong decision - people will sometimes voice their opposition, but they don't always offer their assistance. Stay encouraged - I pray that things work out for you and your family.

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Sometimes at home care is the only option. Not everyone qualifies for Medicaid and paying $4500 -$5000 a month for residential is more than most of us can afford. So, at home care is all we have. Accept help whenever it is offered. Even a few hours away from home can help reset the buttons and help your frame of mind. Do things that don't involve talking about AD. Go to a movie and lunch with friends and ask them not to talk about AD. And yes, prayer is very helpful to me. When I think I can't go another minute, I somehow find strength to go on through prayer. God didn't 'give' our loved one AD, but He can help us deal with it. Bad things do happen to good people and we must find strategies to get us through it. Check into some in-home help. Medicare and most insurance will help with that. If you can afford it, get someone to come in twice a month or so to clean so you don't have to worry about that. And let your family know, in no uncertain terms that you need help from them.
I will have to care for my husband at home until the end. Right now, it is difficult but doable. As it progresses, we'll see how I manage. I am fortunate to have my son who came home to help me. It is his step-dad but they are very close. My prayers for you.

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Dubbie42, if you spend down your assets, I know you can be eligible for Medicaid, and you can continue to live in the house you are in. Of course, you will have nothing left for your children to inherit. That stinks, I know, but you earned the money, and you should be able to spend it on your husband's medical needs as well as yours. It really is too bad that people who work all their lives to acquire something have to lose it at the end to get healthcare.

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laststage, thanks for posting that journal page....very generous and courageous of you.

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cats07, I so wish there was an easy answer for your question. It can seem daunting to even make a call to get help when you are exhausted and overwhelmed from caregiving. Please know that this is a good place to come for support, ideas, encouragement, or just to vent. You *will* find strength to make that call and to act upon the decision that's best for you and your loved one.

(((((HUG)))))

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Debbie42 - chestnut is very correct in the advise given. Spend down your assets. Check with an Elder Law attorney, my sister found one that - for $800 did all the paperwork for our mother to receive VA benefits because my father was a Veteran. You do not give the age of your husband, if he is a Veteran, there is additional help for them. My mom was 82 when diagnosed; is now 88 - we never thought she would last this long and sometimes it's hard to get Hospice involved for this very reason.
We also found a nice ALF that was $2,000 a month - we found several and put her name on all of them. Although it was almost a year before a bed became open, it's possible to select a few places now and get your husband on a waiting list. With mom's $1,200 a month in Social Security and then the added VA Benefits of $1,100 a month - when a bed became available we could not hesitate. My mom is now facial paralized, she can't speak and now can't swallow... - it's horrifying. Her cost for her care in the facility went to $2,200.. but she got blood clots - so we were able to get Hospice involved and they will not move her, she doesn't or I should say - we don't have to worry now about her going to a hospital if in distress, she will be allowed to die at the ALF she has been at and the people are wonderful. If your husband does not die of a fall or something else and lives out this desease, you will not be able to care for him in your home; it's impossible. If something happens that would allow you to have Hospice take over - grab up that opportunity, they handle everything and with so much care. If I can stress one thing it is... don't allow anyone to try to save him... it will take every asset you have, allow your husband to die. AD makes living death a reality, I think it's worse for the families that love them so much because it takes everything, everything in your life away - all the memories, all the good times and the bad. The one with AD doesn't have a clue, it's the families that suffer. I would also suggest - although it's a very hard decision to make - to donate his body to a well researched University or medical institution that is studying this dreadful desease - it gives us hope that we are doing something good - something that will help future generations. I'm so sorry for what you are going through and will go through. If not for anyone but yourself, you should consider some things posted here. If something were to happen to you before your husband passes, and this is not uncommon, you will be at peace that you have things in place for him. I would not put my children through the care it takes to handle my mom. I hope and want them to keep any good memories of their grandma, memories that have been destroyed to me, my sister and brother. Think about what this might put your son through by having him help you. This alone is a good reason to plan ahead on placement and not think that you will care for him at home until the end because of money issues. If you read my profile; which has my complete journal - I thought I heard a laugh but it was only a burp... it outlines a harsh reality of what it will take and...it was written over a year ago and encompasses just 2 weeks, with whatever humor I could muster up. You will realize that if he lives out this desease - it's impossible to care for him at home until the end. My heart goes out to you, as timarie says; this is a very good site to be on for support and to read through and with people who actually are there, been there and are going there. Try to smile today and if you can... look through some pictures that bring you good memores. You are in my thoughts today... I care.

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I am 69 and feel like my life is over. My husband is 77, he was diagnosed in 2007, but problems were there before that. By the time he is gone I won't have any life left if I even make it that long. I love him, but sometimes I wonder if he is "in there anymore". He is still at home but I'm not sure how much longer I can do it.

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JudyTBT -- I've been thinking just the same thoughts as you express. I'm 68 (almost 69, but who's counting?). My husband is 88, was diagnosed with AD in 2006 (but was having difficulties at least two years prior) and is now in memory care. He really is my entire life. Everything revolves around him -- doctors, occupational therapy, meetings with memory care staff and other residents' families, communicating with his family. Yes, I take care of the house and yard, attend church, occasionally have lunch with friends, but have no plans for my future. I suppose that, assuming normal course of events, I will have many years after he is gone. Where do I start making those plans? I've set my own life aside for so long, I have no idea.

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It breaks my heart to read these posts and the read how you think your life is over. I'm so sorry, this is just a terrible card to be handed. If you have your loved one in Hospice, you have the choice to withhold food and allow him to die. I see so many people on this site going through so much and putting their loved one through so much when the fact is, we all will die of something. Don't try to save them, I would not allow any test, needles, pic lines and if there's no desire to eat, no food. My doctor told me that it's peaceful. Physicans have to try to save.... most wish they could be allowed to do more but their oath won't allow it.
My thoughts are with you and please don't think your life is over.

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Thanks to all for the info and advice. I have talked to elder attorney and several agencies and because of our unique circumstances, we don't qualify for aid. Plus, if I did spend it all down, which I can't, they would take his income to pay for it and I wouldn't have enough to live on with my $830 SS check. I do know people who have cared for loved one at home till the end and while difficult, they were able to make it work. I will be able to get hospice for him when needed. Laststage, I have been a big advocate of withholding any kind of life saving efforts for AD patients. It is what my husband and I talked about some time ago, and even his doctors agree. He is 85 and why make him suffer through this disease to the end at his age. He has heart disease and has had 4 heart attacks, one severe and several strokes, none major. We hope that he goes quietly one night in his sleep from a heart attack or stroke. Right now, he remembers his meds, but when he forgets them, I will not remind him or give them to him. It is a cruel and merciless thing to do in my opinion, to try to keep him alive when there is no quality of life.
I just turned 70, but I don't feel my life is over. I have no idea how long I will be caregiving for my husband, but I am keeping other parts of my life alive, even if I'm not able to be active. My son has moved home to help with his step dad but he isn't able to be here all that much. It is nice to be able to get away once in awhile and know that my son is caring for him. So far, no outside help although the doctor has written the order for in home care when I decide I need it. We'll see. I just take it day by day. A lot of it is just plain attitude. It is the most difficult thing I've ever done, but I know it could be much worse.

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Knowing that my life is not over is precisely my point. I'm wondering how I go about making plans for the rest of my life after my husband is no longer here.

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Hi All,

If anyone is a Veteran or married to a Vet. Or Widow you maybe eligible for benefits of up to $2020 per month. The sad part is so few Vets know this is even available to them.

Arick

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Wow! We seem to be in very much the same place. My son also moved home to help me take care of his dad, but he works part time and has a small business that he has to attend to, so much of the time he is busy. But he makes time for me to get out by scheduling his work around some of my "timeouts." He has been a true Godsend for me. I don't know if I could do this without him, even though I do send GT to daycare once or twice a week, mostly in the winter months. They too are very important to my son's sanity and mine. Like youl, I just keep on Keepin' on.

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What is the help for Veterans called?

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Look Up Veteran's Widow Benefits. You might qualify for some of these, an elder law attorney will usually give you a free consultation, one charged my sister and me $800 to do all paperwork - it was worth it, we were/are under enough stress. It can take up to 6-months but it pays retro, so 1st payment is lump sum of what is due from filing date. It was enough, and still is, to keep mom in a facility.
Now that Hospice is involved my 88 year old mother can die there. They won't move your loved one if under Hospice, even if no money is available except the SS and VA. Our mother has no assets, nothing.

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cmn1... and you all... the "life is over " thing breaks my heart.. my husband is in mid stage... and I am it.. as caregiver.. daughter still thinks he has memory problems and brings in puzzle books once a year.. ugh..but that is ok... I love him with all my heart.. and will be here...and yes our life revolves around Drs and his meds.. but I do get a laugh occasionally and I can still get out and meet with girlfriends for lunch or a movie...but the thing someone said about not planning for the future struck a cord.. I have friends planning a vacation or a trip and I realized that it was over .. that was not going to be our future any longer... that is a sock in the gut.. but I know it so I make other plans... a ride in the car.. a short trip...or dinner out... til that ends I will continue.. and thanks for the journal entry... it is sad but so helpful... thank you all for sharing and keeping this up... God is watching.. and He loves us all

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