Elderly parent

[donothing]

My mother is 88, has cancer and is in a nursing home. They have been giving her therapy but have given up. She just can't get up onto a walker or walk. She has an abdominal drain tube and a catheter that gets changed every 30 days. She sometimes has low blood oxygen and has to go on oxygen for a little while. No actual cancer problems yet except the drain tube. In spite of this she feels that she would be able to go back home for a while. We have a friend that is available 7am to 7pm that has elderly care experience. Have any of you had a parent be able to leave a nursing home with this many problems? I think she will wind up back in the hospital in no time. Some people have said that I could get into trouble as her responsible party if I assist in this plan. This is probably a common problem with us retirees. Those of us that are lucky to have parents still alive all have elderly parents. Thanks in advance. She qualifies for hospice to change the catheter and drain the abdominal bag, check blood oxygen daily etc.

 

[youbet]

donothing.....

I'm sorry to hear your mom's status and your predicament. These are tough.

I wish I had some experienced advice for you, but I don't. A year or so after my dad and I had a conversation where he told me, on no uncertain terms, how he would like me to handle his end of life management, he died suddenly, in apparent good health, of a heart attack at 83. I never had to manage his wishes.

He really disliked the idea of nursing homes or lingering illnesses. He explained that if he could be propped up to spend an afternoon, pain free, looking out his window into his beautiful, rural backyard, he'd rather do that than live for a month in the hospital. He repeated the story several times until I made it clear I understood.

To this day, I don't know how I would have pulled it off had his health slowly deteriorated and I had needed to find a way for him to be home to pass, even if doing so substantially shortened his life. I've come to understand his feelings. I just didn't get the experience of trying to make it happen for him.

I'm really interested in what others will be saying.

Good luck with this. I hope it works out.

 

[MichaelB]

Donothing, so sorry to hear about your mother's condition. Have you discussed this with Hospice medical staff? The hospital should also have a social worker / case manager who can assess this, advise you and determine if your mother can receive the care she needs while at home.

 

[H2ODude]

Sorry for your situation. I'm a major fan of hospice. Both my parents spent last six months (7 years apart) in our home with hospice assistance. I wouldn't say it's for everyone, but it made as hard a time as good as it could have been. In the end, we knew we had done all we could and made their final days as comfortable as possible. Had us, with mother kids were still here, pets, home environment. If the pure pork diet after 75 doesn't take me quick, I hope to have something similar available to me...

 

[Purron]

My husband's mom was in a similiar situation. She was very ill and frail yet wanted to go home so bad. I felt so bad for her because I'd want the same thing if I was in her shoes. The reality was, she was way beyond the point of leaving the nursing home. She ended up living there for several more years before she passed away.

My husband's family did everything possible to make it the best it could be with frequent visits and family gatherings for the holidays, mom's day, her birthday, and so on. Plus - and this is important - keeping an eye on the care she received and staying on top of the caretakers and doctors. Still, we knew what she really wanted was to have her life and independence back but it just wasn't possible.

I think this is one of the most heartbeaking things in life - not only for the one in the nursing home but for the family and friends that love them and wish it could be different.

Bless you for caring about her and standing by her side. I've seen so many elderly people abandoned in nursing homes and your mom is lucky to have you there caring about her. She's very fortunate to have someone that loves her and worries about her quality of life.

Keep the faith and keep us posted.

 

[Moemg]

The real problem is that she can not walk so whoever will be taking care of her would have to lift her and that takes a few strong people even for a lite weight . I would have Hospice evaluate her and see what they suggest . It's tough dealing with elderly parents . Good Luck !

 

[W2R]

My husband's mom was in a similiar situation. She was very ill and frail yet wanted to go home so bad. I felt so bad for her because I'd want the same thing if I was in her shoes.

I would too. I love my home and probably would want to stay here as long as I could. It's a tough situation for all involved.

 

[bbbamI]

Such a tough situation....

If you find taking her home is not possible, check to see if you can bring some items from her home and place in her room at the nursing home. Pictures, quilts, etc can be soothing.

Edit to add....

Mentally, is your mom in good condition... IOW, do you think if you took her home, is it possible she would become confused and not know where she is?

My heart is with you. We were not able to bring my momma back home.

 

[Nords]

Everything I've read says to have a meeting with the hospice staff (include your mother in the meeting) to decide the plan. If your mother wants to go home, then that's the plan.

My mother (a registered nurse) was in a similar situation in the 1980s with bone cancer. She had surgery to set a broken leg and just wanted to go home afterward. They put together a discharge plan with a hospice nurse and she came home with a special bed, medications, treatment gear, everything. Of course once Mom was well & truly home she announced that she was not returning to the hospital under any circumstances. I think the hospital and the hospice staff understood that was her plan from the very beginning, and they quietly & professionally supported her.

I've also read that people who used hospice have all said that they wished they'd started talking with the hospice staff sooner. The emphasis is on slow medicine and quality of life, not rapid heroic livesaving measures. Oncologists are not always on board with this attitude.

 

[youbet]

they quietly & professionally supported her.

+1

 

[BizzyC]

Hi Donothing,

I don't typically post, but I've just been through this with my Mom, so I wanted to share some thoughts. And my heart goes out to you. This is not a fun time for her or you.

Moemg got to the big issue, which is that if your Mom can't walk, she'll need to be changed in bed. You actually don't have to lift the person, just roll them to one side, place an diaper, and then roll them to the other side.( Hospice can show you how. I can't recommend hospice enough.) But, speaking from personal experience, this really takes two people. One to steady and hold the person on their side while the other places the diaper. So if you can only have one person with her during the day, I don't think that is going to work out. And please don't take this to mean that I'm telling you not to bring her home!! I completely, totally understand her wanting to come home. I know that if it were me that is what I would want. It is what my Mom wanted. But if she and you choose to bring her home, I think it's going to require two people. Also, do be aware that she may need attention multiple times during the night, so your sleep may be really impacted. Oh-- and get yourself a baby monitor to put in her room so you'll hear if she's active or needs help.

Others have mentioned hospice, and they were hugely helpful for my Mom. One thing I didn't know before is that they will arrange for you to have a "comfort pack" at the home, and it will be stocked with liquid morophine that is just placed under the tongue or back inside the cheek, so you needn't fear her being in pain if you choose to have her pass at home. Hospice can help with a huge number of other issues, like sending someone out to bathe the person, someone comes out to massage the person, and tons of just good knowledge and learning about what to expect. Also, they are very, how can I say it, they don't push any particular religious agenda on you.

If bringing her home is not the right decision, just spend time with her there. It's the time and company that matters the most.

Best wishes.

 

[packrat44]

Of course once Mom was well & truly home she announced that she was not returning to the hospital under any circumstances. I think the hospital and the hospice staff understood that was her plan from the very beginning, and they quietly & professionally supported her.

I've also read that people who used hospice have all said that they wished they'd started talking with the hospice staff sooner. The emphasis is on slow medicine and quality of life, not rapid heroic livesaving measures. Oncologists are not always on board with this attitude.

Those were the exact words my father (almost 98) said when he was released from the hosiptal a few months ago after a stroke. Hospice is coming by next week to discus with dad and mom what they offer. Both parents are dead set on staying in their own home until the very end.

 

[W2R]

Those were the exact words my father (almost 98) said when he was released from the hosiptal a few months ago after a stroke. Hospice is coming by next week to discus with dad and mom what they offer. Both parents are dead set on staying in their own home until the very end.

I am so sorry that you are dealing with this dilemma, and hope that hospice can help out. I have heard that they are often extremely helpful, in so many ways.

Five years ago, I would not have been able to relate to their insistence on staying at home, when they would be much more comfortable in a hospital or nursing home. But for some reason unknown to me, my feelings about this have changed in recent years. Now, the idea of moving away from home in my later years makes me feel stubborn, recalcitrant, and resistant (and I am 35 years younger than your father).

I wonder if maybe this attitude has been developing in me as part of the aging process, just as some of us develop curmudgeonly behaviors as we grow older. It certainly didn't come from any logical analysis, that's for sure.

 

[rodi]

Agreeing completely with Nords and MichaelB. Talk to the hospice folks and a social worker.

When my brother was dying the hospice nurses were phenomenal. I was so impressed.

My FIL (88yo) has been wheelchair bound for 10 years without much upper body strength. The vast majority of his care is given by MIL who's 85. It's possible because we fitted a granny flat specifically so that it's set up for home care for some who's wheelchair bound. Hospital bed, roll in shower, grab bars, poles, pulley above the bed to help with transfers. And my husband has custom built some things to help - (this odd contraption made of plywood and galvenized pipe that my FIL can hold onto - that pivots so he can swing from the bed to the chair.). Where there is a will, there is a way. We saw what worked and what didn't. Our goal was to honor my MILs determination to take care of him and not be a burden... so we needed to make sure *she* did not injured.

There are days he doesn't get out of bed - and you *can* change the diapers with just one person. Especially if that person is light weight/frail. We use pillows to prop him on his side. We learned this from my stepmom, a nursing instructor. Observe the techniques they use at her nursing home... ask questions.

My in laws are on site with us - although technically living independent of us - in a detached granny flat - but we're there several times a day to help or to give MIL a rest. It's a 50' commute from our door to theirs.

Talk to the hospice people and the discharge nurses. Find out what would be required of you. Decide if you're up for the challenge.

 

[MBAustin]

Agreeing completely with Nords and MichaelB. Talk to the hospice folks and a social worker. ...

My in laws are on site with us - although technically living independent of us - in a detached granny flat - but we're there several times a day to help or to give MIL a rest. It's a 50' commute from our door to theirs.

Talk to the hospice people and the discharge nurses. Find out what would be required of you. Decide if you're up for the challenge.

Kudos to you, rodi, for your family making this a much more comfortable situation for your ILs than many would be willing/able to do. We can only hope our own children will observe and learn from those like you.

 

[kumquat]

In guess 'it depends'. My DB,who is 10 years younger than me, was diagnosed with MS about 5 years ago. Wanting to stay independant as long as he could, he and his DW sold their 2 story house and built a new one, complete with wheel-chair shower, grab bars everywhere and all the rest of it. Reality, 2 years later, DB can't sit up in a wheel-chair, can't talk (other than an occasional one word response) and other problems we won't go into. A few months ago, SIL had him assessed. Here in Canada, it meant he required "level 4" care (24 hour nursing help).

He is now in a long term nursing home. SIL is a lot less stressed and, being Canadian, I willingly pay for it via taxes.

As usual, YMMV.

 

[flyfishnevada]

Sorry to hear about your mom. We went through this last year with my wife's dad. We were lucky as he had an assisted living facility just down the street from his house and he knew the owner. Still it was tough on him and us.

I agree with the idea that home is probably the best place if that's where she wants to be. I know a lot of people will disagree, but dying at home, even if it's sooner than it might be otherwise, is better. Lot's of doctors and health care professionals are so focused on saving and extending life, they forget about quality of life. My father in law had little choice. His dementia was so bad he couldn't live at home anymore, even with help.

My wife and I both agree that were going to die at home if at all possible, and god willing that's half a lifetime away. Dying with some dignity at the cost of a few months or even years is worth it in our opinion, especially when you consider that those month or years may be lacking in quality. Were all gonna die and we should consider ourselves lucky if we can dictate the circumstances of that death, even in some small way. As Kumquat said, YMMV.