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Topic Can PWP remain in home until the end? Go to previous topic Go to next topic Go to higher level

By Lacy On 2010.11.10 11:30
My husband is 72 and in stage 5. I still work but at the moment and for 8 more months, I have someone with him full time while I work. I can't afford a nursing home. Is it possible for him to remain in our home until the end?

By caregivermary On 2010.11.10 18:48
For me, this is a tough question to answer. Most of the time I believe home is the best place for a PWP who is in the final stages. Lately, the issues seemed to be more challenging than I ever thought they would be and I wondered if I should do something different. I don't think there is one answer to this question. I'd say if your husb continues to be comfortable and safe, than I don't see why he can't stay at home. Right now I am managing/juggling several issues and I have asked myself more than one time if I am the right person to be doing this. Hospice is also a consideration and PWP can qualify for the service.
Hopefully, my response has been helpful. Take care and let us know how things are going.

By KD On 2010.11.10 22:08
Both my mom and dad suffered from Parkinson's - each in different ways. My dad had tremors for several years and my mom had a very sudden, debilitating onset (although with hindsight, she'd probably been suffering from it but we hadn't noticed because our focus was on my father). My dad was later diagnosed with cancer and we placed him in a nursing home under hospice care. (I won't even go into how horrible the experience was at the hospital. We'd found out the diagnosis the day before and they were kicking us out 12 hours later.) I knew in my heart that my dad wanted to be at home but I also knew that my brother and sister weren't able to deal with it at the time. He stayed at the nursing home for four days before they agreed that it was for the best....especially when he kept asking when he was going to go home. Hospice care continued at home and he passed away four weeks later. It was very scary at the time because we didn't know what to expect but the hospice people were very good at explaining things. I have to be truthful though and we were on our own most of the time. There were times when we had to call and they would tell us what to do over the phone and other times they would send a nurse out. We had a nurse who came even on her days off. It was great for us but I think it was upsetting for my dad.
A year and a half after my dad passed away, my mom suffered a stroke and we received the Parkinson's diagnosis after the physical therapist suggested that she might have it and we scheduled an appointment with a neurologist. Her health problems continued and she was also diagnosed with cancer a few months later. We brought her home too with hospice care.
I think we did the right thing for my parents. It was hard for them being in a different environment and we wanted to make sure they were constantly cared for. I was able to take time off from work to take care of my father. I later left my job to take care of my mother. It took its toll on me both physically and emotionally. I think each person has to make their own personal decision and I know it isn't easy. It was the hardest thing I've ever done but I wouldn't change a thing. Both my mom and dad were at home when they passed, a place that was the most comfortable setting for them and they both died at peace.
I hope I haven't rambled on too long and that this helps a little.

By Lacy On 2010.11.11 09:08
Thank you so much for your responses. He's still ambulatory enough that he can help me move him around. I'm considering a hospital bed a little later. I'm very strong physically but emotionally I tend to fall apart when he freezes or argues with me.

We have an excellent nursing home here in town and we had to put my dad there for 3 months before he died. I don't want my husband there if I can help it - mainly because we can't afford it. Somehow, I have to figure a way to keep him home and try to get as much help with him as I can. One of our sons lives in town but he works so many hours and can't jeopardize his job by leaving and coming to help me if something comes up. Plus, he works out of town most of the time. I'm pretty much all alone in this.

We do have a young friend our son's age staying with us until probably June but after he leaves, I'll have to make some major decisions about his care.

Again, thank you so much for responding. I just found this forum 2 days ago and already I've learned so much more than I ever thought there was to learn about this dreadful disease.

By Emma On 2010.11.11 11:26
Lacy, welcome to the forum. we are so happy that you found us and hope that you will stay with us. We are truly a family and are here to listen, empathize and help when we can.

My heart goes out to you. I often ask myself the same questions. There are many days when I wonder how much longer I can do this. Like you I am doing it alone. Even though I am physically strong I find that it gets harder all the time as new symptoms appear and old ones worsen. My goal has always been to keep my husband home until the end but there are days when I question the feasibility of that. I am wearing down physically, emotionally and mentally. Even hiring someone becomes an issue. When would I have them here? He needs help at different times of the day and it's not always the same time. I can't afford fulltime help or live-in help and I don't want that. He was in a nursing home very briefly following surgery last summer and he was miserable. I don't know if I can ever do that to him again but there are times when I am struggling to do what needs to be done and think there will come a time when it will be my only option. If that happened we would have to spend what's left of our savings until we were pretty much destitute and then we could get Medicaid to pay for it but I would be left with next to nothing and not enough to live on. There just seem to be no good options. This disease is so much harder on both of us than I ever anticipated. This forum has kept me going and I am grateful for it every day.

By RhondaM On 2010.11.11 11:52
Based on experience with my own parents several years ago, Medicaid was able to pay for my dad's nursing home care without depleting my mother's savings because they know she had to have something to live on after he was gone. She used a Medicaid counselor to help her and it cost her some money to do this, but it ended up being a lifesaver for her because caring for my dad was about to kill her. He willingly went to a nursing home that provided good care for him, he liked it, and she was able to bring him home twice a week for day visits until his death in 2003. My mom has recently passed away now with cancer and I was retired and able to live with her for 6 months and then moved her into my home for the last 6 weeks of her life and it was a blessing, although very, very hard on me physically when she became unable to stand or walk and I was so afraid I was going to have to put her in a nursing home at the very end, but I didn't. I did hire some home health care aides at night, and my brother relieved me some during the day, and she was under the care of hospice the entire time she was ill, but still, most of the care was on me and it got very difficult at the end. However, I would not change a thing. As hard as it was, it was also a very precious time and a way to repay my mother for a lifetime of her care for me.

Like others said, it has to be a personal decision that no one can make but you. With my dad, it helped that he willingly went to the nursing home, it was a good one, and he was content there. When he came home for visits, he would ask to go back there sooner than we really wanted to take him, but I think he felt safer there. He had Parkinsons and quite a bit of dementia and was falling a lot at the end. He passed away quickly from aspiration pneumonia due to swallowing difficulty. If he had not been content there, or asked to go there on his own, it would've been very difficult to force him to go there. I don't know what we would've done, but I know it would've taken a toll on my mother's health since he required so much care and all of us kids were working at the time.

I mainly wanted to say that you don't have to deplete all of your savings in order for your spouse to qualify for Medicaid, because they know you need money for your own survival. A Medicaid counselor can help with this if you don't want to tackle the bureaucracy alone, and since I helped to get my disabled brother on Medicaid in 2009, I can assure you it is a lot of work and a bureaucratic hassle, so paying a private Medicaid counselor to do it all for you is worth the money if you can afford it. Otherwise, you might check into getting a Medicaid Ombudsman to help.

In my experience, keeping a loved one at home is the ideal, but when it comes to the point where you just can't do it anymore due to physical restraints, exhaustion, loss of your own health, etc., then a good and caring nursing home, if you can find one (we were so fortunate to have one near us) can be an answer to prayer. But family assistance, respite care from Medicare (contact aging assistance in your area), hospice, home health, church friends, etc., are a blessing that can keep a loved one home until the end.

Sorry I have rambled.

By Emma On 2010.11.11 14:07
Lacy and RhondaM, Unlike Medicare which is a federal program, Medicaid is a state program and the regulations and benefits vary from state to state. Everyone dealing with an incurable illness should educate themselves on their state's program. I should have clarified that in my original post. In our state the "well spouse" is allowed to keep a very small amount of the couples cash/retirement savings (and our state considers all assets to be joint, even my personal retirement and pension along with money that I alone inherited) and approximately half of the couples joint income. The rest goes to pay the nursing home with Medicaid making up the difference. I did speak to an elder law attorney and a Medicaid caseworker about this after the in-home social worker we had (along with PT and OT) suggested it.

In our case we need both incomes to keep the boat afloat and if my husband were to go to a nursing home I could not live on half of our current income. If I went back to work half of that would also then go to the nursing home. I am 59 years old we still have a mortgage. So, even though I may have to do this someday I still see it as a no win situation which would leave me with next to nothing in savings or income.

By Lacy On 2010.11.11 14:40 are in EXACTLY the financial situation we are in. I could not live on half of what we have coming in right now and we also have a mortgage yet. I plan to do the best I can until the precise moment comes that I can't hang on any longer. I need my job both financially and emotionally. I fear the day is coming soon that I won't be able to leave my husband for very long and I might need to have someone come in and sit with him while I'm here at work but will cross that bridge when I come to it.

Finding this forum has been a godsend!!! I now can talk intelligently to the doctors about things and I have so much more information at my fingertips thanks to all of you. I just hope I can repay many of you for your kindness when help is needed.

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