How many caregivers are keeping their spouses at home until the nightmare ends?
I’m absolutely determined to see my DH through this nightmare. I am determined to keep him home until the end. Are there others out there that are doing this and have you managed to keep your sanity through it? My husband is in stage late 4/early 5. He’s always been extremely calm, kind, gentle, helpful, loving. I just can’t imagine him getting mean. I do know we’re going to have to downsize as I can’t take care of our large home alone, but that doesn’t worry me much. This is such a frightening disease. I’m so sorry we are all going through this.
Comments
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For context, my DW is 73 years old and is now in Stage 7f, and on hospice, she is near the very end. She hasn't so much as opened her eyes in months, but still take food if you tap her lips with a spoon. So I 've been through it all, but not all of it with her home. I eventually needed to place her.
My DW was never mean or in any way combative. But caring for her at home became extremely difficult. It wasn't my sanity but the stress of 24/7/365 care that did me in. You're new so you haven't heard my story of coming down with a deadly skin disease due to stress (80% death rate in one year without a long regime of treatment). I thought I was dealing, I didn't really feel I was that stressed but apparently I was. Her care was demanding but I was proud to do it for her as I knew she would have for me.
The point is to at least have a "Plan B" ready soon of what should happen if it becomes too difficult or something happens to you, even temporarily. Some have cared for their LO at home to the end it but none that I know of did so without outside help starting by about mid Stage 6 and increasing quite a bit by Stage 7. When they become immobile, changing your LO alone is not easy and doing it repeatedly day in and day out can break you down. Needing to move them by yourself with a hoyer lift in a bedroom is tough. Care facilities usually require a "two person assist" by this point.
Not to put you off, as you say you are determined, but just advising you to stay flexible and seek help before you need it, plus have a "Plan B".
Also make sure you have all your legal paperwork done now while your DH can still sign things. A DPOA (not just a springing POA), an advanced directive, HIPPA release, at a minimum, wills & trust if warranted.
Best of luck to you.
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Abby627, My DH is now late stage 6, early stage 7. He is home with me and I have Hospice on board for the last 6 months. This past August was our 40th wedding anniversary and we had the best possible marriage. My DH was always laid back, loving and always put me first. I too have always wanted to have him here with me through to the end. I want to do that for him but really it’s me being selfish, as I still want to be with him as much as possible. He may not remember “US” but I do. There are moments that are hard and honestly prayers have helped me through those. I also have family and friends that help by being supportive and listen when I need to vent. I joined a caregiver group here in my area and that has been good for me and I have had some caregivers a hour or two a week. I have learned to be very patient and understanding. I try to always remember our loved ones are not doing any of what they do on purpose, it’s the disease. I did have to give my DH prescribed medicine for agitation at the beginning of stage 6. I didn’t think my DH would get mean (not sure mean is the right word, more like very agitated) but he is easier to redirect and handle with the meds. Just take it a day at a time and also take care of yourself.
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I also had planned to care for my DH until I was no longer physically able to do so. Unfortunately last December I was diagnosed with a rare aggressive cancer and had to immediately place him in memory care. So please have a plan B ready just in case. Find 3 facilities tour them and get on a waiting list of one. Also as Vitruvius posted once your LO becomes incontinent and bedridden you will need help as you can’t provide 24/7 care. Care is very expensive and Medicare doesn’t cover it. Just have a plan. Your DH is very lucky to have you.
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we are early in this journey. DH is 61. I am 54. Last visit to the neurologist said MCI but he has been steadily been declining. I do plan to keep him home with me throughout this journey. Finically I am not sure how I could pay for MC and still have money for the remainder of my life.
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I plan to keep DH at home with me but the more time I have been on this board the less possible it seems. DH is 72 and can still be alone for short periods. I am 65 work full time and have a companion here during the day. He needs help with personal care, meds, dressing. I have managed home health for 40 years as a nurse so feel pretty well-equipped from the knowledge perspective. I do have support. I dread the financial burdens and stress that come with this.
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I sometimes think that being on this board isn’t the best thing I can do for myself, even though I so appreciate all the love and support shown here. It’s so sad to read about what’s to come. I keep hoping for this stage to keep steady for a year or more but I know that’s probably not going to happen. We run a bed and breakfast in our home and DH still is helpful and enjoys doing it. His neurologist recommends that we keep it up as long as he can, so I’m going to keep going with it. It’s very life-changing for all of us that are caregivers, but I truly want to do this. I know he would do it for me. The next step will be downsizing and I know it will break his heart. We built this house from the ground up. It has been a real labor of love for us. Some days I just take a deep breath and carry on!
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@Abby627 When we first got the diagnosis of MCI with depression, I got on this board as well and like you, I was more depressed and stayed away. My husband had a few years of doing ok and that was all I needed. I got back on this board within the last year as he has progressed. It’s been a godsend now. So do what’s best for you and enjoy this moment in your life. I take one day at a time.
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I do plan on keeping my husband at home with me as long as I can. My biggest dilemma is financial. We are in that not enough money for care and too much for Medicaid bracket. My husband is nearly 81, I just turned 68. I would be left with absolutely nothing with the high cost of placement. My husband also has copd, so that’s another factor.
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I get very resentful at times about how much money they leave you with. At $8-9,000/month for care, most people will be broke before the nightmare is over. Congress can spend all kinds of money on nonsense, but won’t help hard-working Americans who so desperately need it. It makes no sense to me. We’re in the same bracket as you are….up a creek without a paddle. All the more to add to the horrible stress of this disease. I will do everything in my power to have him with me til the end! I too, am 68. My husband is 76.
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My 'plan" is to have my DW, age 49 with me until the end. I pray that can be so both financially, physically, and emotionally. Full on stage 4, we'll see.
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I’m not trying to be a ‘Debbie Downer’, but…hope for the best and plan for the worst! See an elder care lawyer asap and find out what (if any) options you may have financially. Think about how you would go about selling your B&B and where you would move to downsize. You don’t have to act on anything now, but chances are you’ll be exercising all of these plans on your own as your husband may not be able to help when the time comes.
My thought was always to keep DH here, but at 6’2” and 250lbs, I don’t know that it will be a possibility should he become fully incontinent or unable to walk. Right now, every day brings a surprise, some good, some bad. Just don’t be caught short, think about it now. Good luck!1 -
I know medicaid is different in each state but in a lot of states there are things you can do to protect some of your assets like your house. If you sell your house then it is cash available for care so it may need to be spent before you qualify for Medicaid. In some states you can put your money in a Medicaid approved annuity. An approved annuity does not count against you. You should talk to elder law attorney if you haven't. There may be options available. I talked to one briefly and found there are more options than I knew or found on line. I haven't acted on them yet but it nice to know they are there. A plan B or C.
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I am relatively new to this board. I've been on for about 3 or 4 months now. So far, I have found it informative and sad yet encouraging. I feel we need to realize that every situation is different. Every individual situation is different. WE all want to keep our LO with us at home as long as possible. I don't know what I will do, but I am doing all I can now to educate myself. I am 65, and my DH is 82, almost 83. He's declining, and I see him week after week. I have to work because we have a mortgage, and he cannot contribute financially. I pray that I develop plans B and C if needed. If he gets to a point where he needs care around the clock or at least during the day, I am not qualified to care for him.
I'm doing all I can now to care for him, and I'll continue to do that with all my being. I also know I have to take care of myself. This is truly an awful disease for anyone. I wish each one of us the best. Please don't stick your head in the sand and think things are going to get better for your LO; this disease is a downhill journey. Do your best and know when you need to step back and get help when possible. Look at options before you need them; red tape is always there. No one needs the extra stress, including your LO needing help, and your help is weeks or months away. If this board is too stressful, yes, maybe take a break. It helps me to know I'm not the only one and provides some situations I may encounter. Sorry, for taking so long and maybe even venting, but do what you think is best for you and your LO. Take care3 -
I am also 68 with a hubby who's 76. My plan is to keep him home as long as I can. I used to tell myself he will be home until the end. I no longer say that's a hard and fast rule. He will get worse, a lot worse. I am strong and I am tough but I realize I'm not invincible. He's 235 and I can't lift him if he falls and unable to help get up. If he becomes combative or violent, the deals off. I've been through domestic violence in my first marriage and will not tolerate it again. Dementia or not. That's a hard no! I hope I can keep him home and will do all I can for as long as I can but please know there may be a time he requires more care than you can provide. It's not failure, just the sad reality of this horrible disease.
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When I learned what Stage 6 and 7 were, I thought “I can’t do it”. Then about a year ago, DH developed a sensitivity to artificial sweeteners and had bouts of nausea, diarrhea, dehydration and weakness. He fell 3 times. First time, I had to call the fire dept (bless them!). The second time, at midnight, he couldn’t get up onto his hands and knees and there I was, putting my long yoga belt around his belly and pulling up to help him onto his hands and knees. Another nope, I can’t do this. DH has a LTC policy which gives me options. Now, because he had to stop his Donepezil, he’s progressing quickly. He knows me as “his person” but not his wife. He’ll tell me that his wife does this or that. He gets lost in our home. And lots of other problems now. And now he’s having a lot of trouble walking. I’m probably going to place him in a couple of months. Yup, hard as the dickens. No good decision here. Different for everyone. Don’t feel guilty if you realize that you can’t care for them to the end.
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I agree. I also get resentful.
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Thanks to all of you for your comments. May God bless all of those who are going through this.
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My DH had FTD and ALS. I was able to keep him home until his death. Believe me, there were times I questioned whether I could do this. Thanks to the VA, I was fortunate to have CNA help of 30 hours per week and hospice visits for 2 years to help me care for him. As I look back, I know I gave him a gift by keeping him home BUT there were times I felt a facility may have given him better care, e.g. turning him. I got very skilled by the end of his illness but it took a while on the learning curve. I'm sure DH paid the price of my inexperience. It got easier and easier the more confident I became. Also, I'm an introvert so I didn't mind not really having a social life outside the home. I had friends who visited me and DH. Again, I felt I gave him a gift and I'd do it all again in a heartbeat. No regrets! I did have a back-up plan facility, just in case. Good luck. Whatever decision you make will the right decision!
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My husband died at home but the last year I had help and the last few months 24/7 care. It was very expensive but still much less than placement.
You do what you can and make your decisions based on that.
Every situation is different, I do suggest you get all of your ducks in a row including Plan B placement.
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I have no idea if my DW will be able to stay in our home until she passes. I do know that she and her sister's placed their mother in MC and about 5 months brought her home with hospice to pass.
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God Bless you, Lills! I will do everything in my power to keep him with me. I, too, am an introvert. I love being home. I have the support of 2 wonderful friends who check in on us all the time. My DH doesn’t qualify for the VA help I had hoped for, so I will have to hire help at some point. I’ll cross that bridge when I come to it. I’ll put it in God’s hands and pray! I will have a plan b in order, too.
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Sometimes you just can't do it. It is very difficult to be sole caretaker for someone who wanders, because they will get out while you are asleep, and it is very difficult to be sole caretaker for someone who is violent toward you. Finally, it is very difficult to be sole caretaker for people who have lost mobility. When I spent my days reading other people's medical records, I saw case after case of caretakers (usually women, since they are usually smaller) who literally broke their backs caring for someone. At that point, both go to NH.
My wife is living with me, but I am not swearing on a Bible that she will die here at home. It is not entirely under my control. Just because I could lift her and carry her around the room for fun when I was 28 doesn't mean I can do it at 78. For that matter, it is by no means guaranteed that I will outlive her. Even if I plan to keep her at home, I need a backup in case I'm not around to make it happen.
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I am planning to keep DH home the whole time. Many factors involved in that decision. I am 54 and he is 61. We have too much money to qualify for Medicaid but not enough to afford MC. I work full time from home and at my age I need to keep working. I potentially have a lot of years to live and cannot wipeout the savings we have managed to save. I will more than likely need help later on but I am just praying and powering through.
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I truly envy those whose LO could stay home through the end. I also would have, but DH's aggressive and combative behavior made it impossible to be safe any more. We/I had no other option. Paying for memory care has been a bleed to our savings, but safety came first. Do have a plan B and C in place just in case.
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We are starting year 15 since mci diagnosis. If I had the money he would be in memory care years ago. He is pleasant most of the time now but we have been through the angry years, and I have made all the adjustments necessary to survive this disease but this body and soul is worn out. Whatever energy and desire I had like you got up and left long ago. It’s time to bring back The Calvary is Not Coming and get back to reality. Sometimes loving someone and sacrificing is just not enough. Hope it works out for you better than for me. Best wishes!
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Dad's hospice agency found a good Al home for him and Mom reluctantly moved him there even though she is concerned about the cost. It's 3 months now and my Mom finally accepted the fact that Dad will never come back home. She knows she cannot turn him to clean him up. He is double incontinent and bed bound and has multiple fractures. We visit him 4 days a week.
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My DH is 66 and I am 59. He was diagnosed with Primary Progressive Aphasia which causes dementia. He progressed fast over the past 2 years but still knows his surroundings, family and friends. He gets easily frustrated and can be angry (never physical) but most of the time is kind and caring still. I plan on keeping him at home as long as possible. I still work and have currently a care companion 3 days a week. We don't qualify for Medicaid and hopefully our savings allow us to keep getting help. I have no idea how long or how fast he will progress but realize I need to look into Plan B or C to make sure we are ready for anything that comes at us. He is currently on Lexapro and Donepezil and it seems to help. Also no idea how long that will last. Scary to think what lies ahead. I hope to gain some insight from others and share my own experiences. Courage to us all!6
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Oh my gosh. I am so, so sorry. It’s such a horrible disease and to think that it can last that long is heartbreaking. Something just has to be done to help caregivers on this long journey. It’s not right that we have nothing to look forward to but financial ruin and heartbreak watching our loved ones slowly die. God Bless You and give you the strength to get through this.
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((HUGS))
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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