Husband has Alzheimers. For 6 years I have been taking care of him, by myself. No family or relatives near by to help. I am mid 60s, he is mid 70s. I tried, wanted to keep him here until he died, but his heart and lungs are too strong, and his body got weak, not being able to get up and walk. I could not do it anymore. Mentally and physically I was 'losing it'. I put him into an assisted living dementia lock down home, a few weeks ago.
I am trying to cope. Miss having him here, even tho he couldn't do anything but sit or lay down, and eat and drink. I did everything else. Not crying quite as much as I did. But I am wondering what I should do next, where I should go for help. He is a retired Veteran. Our Social Securitys and his retirement are going towards his rent at the home. I am living off our savings. Should I go to VA? Should I get an attorney, or Elder Law specialist, or? Maybe I am still not thinking straight. Trying to get my head on straight, and my so called Friends are throwing sarcasm my way, trying to make me feel bad about my decision.
My dad didn't have Alzheimers, he had lung cancer. But once he couldn't get up from the toilet, I had to put him in the Skilled Nursing section of the place where he lived with my mom in Independent Living. There is just no way for one person to handle that and keep their own health and sanity. You did the right thing. Now you can go back to being a wife and caregiver and not nurse, personal aid, bather, cook, etc. Hugs...you did the right thing for both of you.
I was able to keep him at home, and at the end had hospice come into the house. But not because I was a martyr but because with help I could deal with his particular symptoms. He was able to get out of bed and to walk until the very final days.
It sounds to me like you are keeping the promise I made -- you are not abandoning him, you are advocating for him, you are seeing that he gets the care he deserves and that you could not provide by yourself. It certainly makes sense to me that you feel bad that your husband has dementia, and that you feel sad he is not with you in your home. Crying seems an appropriate response. But shame on your "friends" for trying to make you feel bad about your decision. You are doing your best, your are doing the right things. You are acting in love. It is the "friends" who lack compassion.
On a practical level, follow Pam's advice. AND also consult an attorney specializing in Elder Law. You need to be able to support yourself for another three decades or so. You can't use up all your savings before you seek help. An attorney can help you look after your own interests as well as your husband's.
Having to place a spouse in a care facility is a major milestone of loss. Allow yourself to mourn. I am glad to see you getting on with the next phase of caregiving. You'll get through this, with your compassion and self esteem intact.
kidding , but if you need a good laugh , check out al yankovitzes " amish paradise " video on youtube ..
I did manage to get out of the town the first few days to visit one son and the grandkids... I have had 3 phone calls since returning home as to how my husband is more confused, agitated, and roaming then he use to and would I talk to him to calm him down... Respite with the Va here is 2 week program, he thinks he has been there for months, and I reassure him I am picking him up this coming Thursday as scheduled... The head nurse and Dr both have called me to tell me its time for him to enter a nursing home, that is where is now in the VA hospital he is.. I had finally done the paperwork for the state Veterans Home, but sadly there is a 2-5 year wait. the nursing home at the VA he is at is a little over and hour away, but wait is only a few months.. I have spent most of "rest" time crying and feeling like I failed him and a failure.. His behavior reminds me of his PTSD he had when he returned from Vietnam and sadly I really dont won't to go thru that again, because now I can't get away for a while or have him get away till he chills out.. I can't leave him now.. My head tells me its the right thing, my heart feels like I have betrayed him.. we will be married for 41 years this fall..
Just to let you know you are not alone and in the end we are making the best decision for our husbands AND ourselves.. It has taken me a long time to admit I can't do this alone at home anymore even with day care a couple days a week..
We will still be taking care of them, just someone else doing all the heavy work.. I will still be his advocate and pia to nurses and dr.'s about meds etc.. I already do that! he has become very sensitive to meds because of his LBD.
My husband is still at home with the aid he got from the VA. Even with that help, I still struggle with the idea of maybe it would be better to put him in a home. I promised myself I would do everything I could to keep him home and so far I'm doing it. My doctor is concerned that I am struggling with depression. I don't see it as that. I'm struggling with reality. I feel for you and pray for you. No one knows what this disease does to the caregiver until they live it. Get better friends next time.
Then take time for yourself. If you used to like to garden, then get out there and dig some dirt, whack some plants, get yourself some outdoor exercise so you can sleep better. Set up a little respite & reading zone out in the yard that is new for you to get a change in your visuals. If you don't have a yard, most cities have community garden programs - we have several in my city (New Orleans) and most who garden are in their 60's. In most places the library has become a great resource - far removed from what libraries were in our 1950's & 1960's childhood too - often they have lots of speakers & classes (yoga, cooking, horticulture, genealogy) that are free and maybe an hr or two - enough time to get out of the house and move your mind into thinking about something else and speaking with others on subjects totally unrelated to caregiving & who don't know your whole backstory.
About your "friends", well often a lot of the hurtful things people say is because of their own fear that it could be them. I'd bet that they are singles too that say the meanest things too.
If you can, every few days try to get together a ledger of your finances & all your legal paperwork. So that you have a pretty accurate look at what it costs to maintain your standard of living & where you stand for the future. What often happens is that the "community" spouse (- that would be you and it is community as in living-in-the-community rather than community-property) often starts to spend down their assets beyond what they need to in order for the in the NH spouse to qualify for Medicaid. You don't want to do that as you will need all the funds you can for the possible years & years on your own. By & large the community spouse can have about 113K in liquid assets in addition to the exempt assets of a home & a car & in some states SPIA's under Medicaid. Also as the community spouse you can file for MMNA - which is monthly maintenance needs allowance - to be diverted to you from your spouses co-pay of his monthly income. So that you get the MMNA rather than all of his income going to his co-pay (also called his SOC - share of cost in medicaid-speak) to the NH. Think of it as alimony for elder spouses. Most couple don't realize that the still @ home one can file for MMNA and it gets often overlooked. Medicaid for couples is a totally different qualification system than that of an individual applicant to Medicaid (which is usually 2K in income & 2K in assets), so don't let yourself get confused on all this. Most folks have the experience of dealing with Medicaid system for a parent who is a widow or widower and it is very very different approach for Medicaid which is not the same as for community-spouse Medicaid applicants.
Step 2 - give yourself time to adjust before you make any major decisions. But yes, do talk to any organisations that seem relevant and take careful notes of their advice.
Step 3 - big hug. You have been both practical and courageous. I really hope things begin to work well for both you and your husband from here.
I am 60 and my mother in law and Mother are in their 90s. What I wish that they had done was "throw stuff out!" Who is supposed to go through all of your clothes and books and just stuff in general? So, you are going to be surprised when I say 'Have a tag sale, rummage sale, or give stuff away." You did the best that you could for him. Bless you.
My husband is 64. I am 68 & a trained professional in the field. My life goes on.
So his does too....He is still at home as long as I can do this. When my daughter's died, he was the one who handled most of everything. I was out to lunch to put it mildly.
I can tell you that the depression will lift. It always does unless there is an underlying cause.
I am an R.N. & refused to take any meds myself. Still am not on any. Not into medications for myself. This is just my choice. I do have a support system, here on line. It would be great if you can get out to a support group.
I did not understand the Capt's comments today but when you have been here a while you will get to know him and understand what a kind caring and intellegent human being he is. He cared for his mother single handed for many years with dementia till she died. and it was not an easy task. now he is giving care to his aunt her sister whis is just as demented as his mother. Not too many men take on this task so we all love and admire him. please don't judge this particular book by it's cover which is very well worn but enjoy the warmth and humor inside
I knew this was coming, but I was in total shock.. they already did all consultations and all agreed that he needed placement, it was my decision wether he stays (the locked dementia unit of the CLC has an empty bed) or come home and when the next bed came available he could come back.. It took me quite sometime to absorb this since I was not expecting it all today.. In the end I decided this is the best and most likely easiest adjustment for him (I am still crying and in shock),as he has been there 2 weeks now.. But I have been getting reports all week about him getting more agitated and wandering and just standing over other patients and staring down at them while sleeping, which is what he has been doing at home for a few months.. He was checked before and again for an UTI and none..
I too feel like I have betrayed him, as the last time I spoke to him last week I told him I would be coming Thursday (tho he doesn't know what day of the week it is) to pick him up.. BUT~ I also was nervous about "who" was going to be coming home with me...
I need to tell our children, one is 3 hours time difference and the other in Afghanistan and I usually Skype with him at night... They knew it was coming, but its still going to be hard calls to make..
We need to keep ourselves together for our spouses (I keep telling myself this) They dont want me to come for a couple weeks until they feel he has adjusted to staying.. that is going to be hard for me, but most likely better as if I went in the next few days I would break down and cry as I have been doing all afternoon.. In the end, my tells me its the right thing, my heart tells me I betrayed him..
This is a sad loss. Go ahead and mourn. Cry. Feel bad. But I hope you can overcome feeling guilty. None of this is your fault, any more than it is your spouses' faults.
Warm hugs to you. Both of you please keep posting. We want to hear how this is going for you. We care.