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DILinMN Asked January 2021

Caring for diabetic double amputee parent. Has anyone done this?

Doctors recently recommended my 72 yo mother in law have at least one, possibly both, feet amputated below the knee due to complications from diabetes. There is a small chance of saving one, and she has not yet made her decision. My husband and I are considering having her move in with us after surgery and some time in skilled nursing. We would have a bedroom and bathroom on the main level for her. Has anyone done this for their parent? Can anyone elaborate on what kind or level of care we may be looking at providing? Should we plan on having to do all of the transferring in/out if her wheelchair? Will she possibly be able to dress herself? Would she be able to be left home alone for short periods of time (like an hour or less)? My husband (her son) works full time from home, but I work in an office. We'd plan on having home health/PCA in to help out during the day as well. We also have 3 kids in the home ranging from 9 to 14 which we need to consider. Looking for any and all advice. Thank you!

dogparkmomma Jan 2021
What is her current living situation? Are there other oprions besides living with you? If only one leg is taken now, the other one is probably so marginal it is only a matter of time. Her current personality and willingness to care for her self is a huge factor. If she has been a non compliant diabetic to this point, she may continue to be. Her dietary needs are going to be an issue. Amputee care is ongoing issues as well. You don’t just remove a leg, strap on a prosthesis and keep going. The stumps must heal and shrink before they can be fitted. Skin care is very important as is adherence to cleanliness or sores can develop. If it is bilateral, then to go to the bathroom she either needs to put on her legs use a wheelchair and be able to get in and out of chair onto toilet or used a bedside commode or bedpan. Someone will like be up to help her every night.

I am a nurse. I am not saying this cannot be done but it is a huge undertaking that could go on for 20 years. Amputees can and do live full lives but it is a struggle for them and their personality and strength of will are huge factors. I am concerned you don’t understand the enormity of this. I am sure your husband feels obligation but this will be an enormous long term commitment. How will you leave her to go on vacation. Your whole lives will revolve around her.
if there are any other options, please consider them.
DILinMN Jan 2021
Thank you! She had both legs amputated below the knee yesterday. Unfortunately her previous home is not wheelchair accessible at all. The only options would be with us or in a long term care facility. I did bring up the vacation aspect to my husband, because if nothing else I know there will be times we'll need breaks! Currently she has a good attitude and is hopeful that prosthetics will be an option, but time will tell as her wounds heal. My husband and I did talk about our limits in terms of what we're willing and prepared to do, and what would require having her in long term care instead out of fairness to her, us, and our kids. Thankfully we are on the same page there.
cwillie Jan 2021
Begin by getting an OT to come to your home to access it for her needs, but IMO you don't have a very realistic idea of just how much hands on, physically demanding personal care she will need.
cwillie Jan 2021
Assess, not access. Although I suppose accessibility is once of the things you need to assess 😜

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Omobowale Jan 2021
❤️🙏🏽 I cared for my husband who was a long-time diabetic. He went through a kidney transplant and later both legs amputated below the knee. (One one year and the other the following year or so). He was VERY independent and driven to do all on his own. Our house was 200+ years old...NOT very ADA compliant! I worked full time but kids were grown and out of the house. Eventually he did well with his prosthetics and even was able to drive again using hand controls. BUT...he was in his late forties/early fifties (??). (he has since passed....I’m now a caregiver for my elderly parents).

Good advice in previous posts. I would also consider her temperament and how she would adapt to living with an active family. My parents had difficult adapting to me coming to live with them—and I am 63! (I am actually moving out tomorrow!). As good/noble it may seem...offering to take her in....it will be much more than you bargained for.

Do seek outside help on assessing your home and advice like the nurse above gave. Before each amputation, they tried saving the foot using wound vac and oxygen chamber therapies. Our dining room was turned into a hospital room. The process took over our lives...it isn’t like recovering from a routine surgery.

Best wishes as you decide.

JoAnn29 Jan 2021
I agree, this is a lot of caregiving. I had two friends who lost a leg. They were never able to wear prosthetics. My GF had a scooter chair my other friend was in a wheelchair for the rest of their lives. Both had very very good spouses.

There will be a lot of lifting. Even with one leg. I would make sure I understood what was involved in her caregiving. How much of it the family may be expected to do. You may need special transportation for her.
DILinMN Jan 2021
Thank you! I did consider the lifting aspect - she currently is only about 90 pounds, so it'd be manageable for now. Definitely something to think about long term, both if she were to put on a considerable amount of weight (at which point I may not be able to lift her) and also the effect on our backs of lifting long term. Did your two friends remain at home? Were their spouses able to care for them? Or did they eventually go into long term care?
AddieD Jan 2021
I feel so much for you and your family.
My family went through a nightmare and I am sure what happened is not the norm.

My mom was 78. Due to circulatory problems, she needed to have her leg amputated below the knee. She seemed pretty matter-of-fact about it ahead of time but couldn’t face it after it happened, and fell into a depression. Then the stump started dying, so her leg had to be re-amputated above the knee.

Mom had always been independent but was now looking at not driving, not working in the yard, not living alone. She seemed overnight to succumb to dementia. An avid knitter and reader, she was now unable to concentrate long enough to stick with anything. She died a few months after the operation from a 3 day bout with a cold that turned into pneumonia. I think the fact that she felt so helpless is what ultimately killed her. Maybe our case was extreme, but don’t hesitate to get her counciling if you need to.
Good luck and hopes go out for a good recovery!

Taarna Jan 2021
It really depends on how well her surgical wounds heal and how mobile she is now. If she heals well, she should stay in rehab until she can navigate with prosthetics or a wheelchair. If she can't handle prosthetics, she may need you to do a lot of lifting: from bed to wheelchair, wheelchair to toilet, wheelchair to car... Lift devices help.

cye123 Jan 2021
I would think this is a very long process of healing and care. Also, at 72 they would need all around care. My personal opinion but I can't see this person taking care of themselves at all. It will be very difficult for you and your family. I do know of a family member in this situation and the elder did not move from their chair all day but they had maids and caregivers. You will need help with care.

Midkid58 Jan 2021
I have a friend whose Dh started out with diabetes, which he refused to deal with and within 3 years he was a double amputee, wheelchair bound and had taken over the living room & dining room with all the medical supplies he had to have to function--including 2 kinds of 'lifts' as he was over 300 lbs and his wife couldn't move him.

So, in their living room was his bed, the lift OVER the bed, bedpans and urinals on full display, a bedside commmode for '#2's" and basins and such for all his washing needs.

He still has a level of gangrene and he is constantly in and out of hospitals, losing a little more of his legs each time.

Not to be gross, but the smell is so awful--his wife comes to church and you can smell HER b/c he smells so awful. She simply cannot keep the smells at bay.

He routinely fires aides, (he's a nasty guy, at best) and leaves his wife in the lurch, scarambling to find help.

I do not know WHY she has kept him home all these years trying to make his life what he wants---guilt? love? (if that's it, sure isn't apparent) kids want him home? IDK. He's in his late 70's.

He would receive MUCH better care at a VA home, which he qualifies for. Moving him to go to a dr's appt is an all day affair as they live in a split entry home (like ours!!) and naviagting those stairs is really, really hard.

I don't mean to be rude or judgy--but this guy is likely to live for many more years, he seems like the kind who would live to be 90, despite awful health. I feel so sorry for his wife--who really carries 99% of the burden. She's completely burned out and my heart breaks for her.
JoAnn29 Jan 2021
He would be in the VA home if I was the wife. Really surprised he is still alive.
Llamalover47 Jan 2021
Imho, you are not equipped to take on the level of care that your MIL will require.

Maryjann Jan 2021
In my opinion, look at your children. Tweens and young teens are at risk for self-image issues. They need as much as you can give them. I know you want to do the right thing for your MIL, but if I had three young-ish children, I would want to be available to them as much as they need, especially since so much of the country is still not "back to normal"; so they may have much more limited interactions with children of their own ages. You can still get them very involved in caring for and loving grandma. Visits, cards, playing games if she likes games, etc. But they don't need to be face-to-face with possibly gangrenous legs. (My own mother had leg ulcers from when I was four years old, and they were horrible. She had a lot of health problems. As a child, it was frightening and guilt-inducing -- I wanted to be able to help, fix it! -- to see someone you love with honestly horrible problems and be unable to deal with it. If they love her and are wired like that, it could be very hard on them.

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