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aelvan Asked June 2022

How can you tell when it is time to leave your home and enter assisted living?

I am the caregiver for my 73-year-old husband with transverse myelitis, spinal stenosis, and arthritis. He has balance issues, mobility issues, and is a frequent faller. Lately when he falls, he has not had the upper body strength to either pull himself up with his arms or to get his legs "work" to help get him off the floor. He uses a regular walker in the house, sometimes a rollator, and a transfer chair. He has great difficulty transferring from the car to his walker and into 3 low steps into the house. His legs just won't support him for long.

NancyIS Jun 2022
As he ages, his health is likely to decline. It would be best to move to a place where he (and you as his caregiver) can get more assistance and where they have equipment to handle transfers, before it gets to be too much for you to handle. The other alternative is to hire caregivers who will come to your home. The advantage of assisted living is that the aides are supervised, staff is experienced and has the necessary equipment. Make sure that all of his (and your) paperwork is in order setting up powers of attorney for medical and financial matters, a living will with your advance medical directives, and wills, if you have assets. There are senior facilities that are "continuous care facilities" where you both can start in independent living, and one or both move to the units that offer higher levels of care only when needed.

MicheleDL Jun 2022
Guaranteed you will get hurt caring for a man in his physical condition. You will be of no use to him when you need to go to the hospital, or have to hire two aids one for you and one for him at home.

My rotator cuff tore in three places and my bicep severed. I continued to care for my husband after surgery and 6 months later two of four stitched places retore.

Unless you have 5 daughters, each named M. Teresa, or a brother named E. Musk, or are related to a magical lady named Glinda, I think the alarm rang yesterday letting you know that it's time.

I know that my, and my husband's, time is coming soon so in the last 6 months I've begun downsizing (right-sizing) slowly. I've gotten rid of possessions for example by either taking tools to an auction house (Quinn's), some items to a consignment shop (Evolution Home), giving things away to friends or a Goodwill type place and even placed clothing and shoes in those yellow donation dumpsters. Lightening the load has been kind of nice, and relaxing actually.

Best wishes to you.

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PeggySue2020 Jun 2022
My in laws mobility has declined to about the stage above. They have 247 in two people. You are only one person, and clearly need more help.

Llamalover47 Jun 2022
aelvan: Imho, you have posed this question as, no doubt, you are speculating on it. The answer to your query will be told when YOU, the caregiver, can no LONGER care for your husband in the home setting, e.g. his needs are greater than your capabilities. That, in no way, diminishes your wonderful care to date. However, it comes a time that he requires trained medical managed care.

ClaraKate Jun 2022
To me, this all depends on your needs and your resources. You are blessed that he is mentally intact, and so this is a decision the two of you can make together.

Have an open discussion with him about both your safety and his, as you may injure yourself attempting to assist him during or after a fall.

Perhaps you will want to look into selling your home and moving to an assisted living facility. They will take patients that are wheelchair bound. You can pay up for level of care if he needs more assistance with mobility, and his insurance may pay for physical therapy that is offered at assisted living through a subcontracted company. By choosing assisted living, the two of you can continue to live together, and you have the comfort of knowing that if he needs mobility assistance or if he falls, there is staff available 24 hours a day to assist him. Although your health insurance and/or Medicare will not pay for assisted living, if you have long term care insurance, they will reimburse you for a large portion of the cost.

If you lack resources for assisted living or want to remain in your home, you can call Community Long Term Care. They will come out and do an evaluation and offer options and support for care based on his level of need.

JoAnn29 Jun 2022
Good suggestions so far.

As suggested get his PCP to order in home physical therapy. Your husband may now need a wheelchair. While there PT can evaluate your home and make suggestions on how to upgrade it to his needs. Medicare pays for the PT. You may get an aide to bathe him. A wheelchair can be gotten thru Medicare too.

When it comes to the bathroom, you can use a commode and place it over the toilet. When new, commodes come with a bucket and a splash guard. They also come with their own seat and seat cover so the Toilet seat and cover can be removed. There is a bar on the back of the commode that also can be removed. You then position the commode over the toilet. Use the splashguard and make sure the bottom is at least passed the rim of the toilet. The legs are adjustable. Now you have arms DH can use to help lower himself down and push himself up. I would think he is already using a shower bench and with that a handheld shower head.

Assisted livings are not cheap. I know of couples who have moved in together. By moving in with husband you can do what you are capable of doing and let the staff do the rest. This worked for my SILs Mom and Dad. He had ALZ she had no heath problems. They lived in the same apartment but she was able to leave him alone knowing there was staff to look after him. She continued to play cards and do her volunteer work outside the AL. Theirs may have been a Community of sorts where an Independent living was attached with activities she could join in on like the cards.

I would start looking for something affordable there maybe a waiting list. Medicaid does not usually pay for ALs but you can look into that since each State has there own rules.

You also may want to talk to an elder lawyer about splitting your assets if DH needs care in LTC and you stay in the home. Medicaid allows for the split. Your husbands split would be spent down and when it is almost gone, you apply for Medicaid. You then become the Community Spouse and remain in the home and have a car. You also get enough or all of your monthly income (SS and pension) to live on. There's more to this but I gave you the basics.

It comes down to, if you can't do it anymore then its time.

ConnieCaretaker Jun 2022
Perhaps it's time to call Adult Protective Services and let them know that you're not capable of providing care and that they need to place him where his safety and health will be a priorities.

Another option I've read here is to take him to the ER and leave him, so that they will be forced to place him.

We live in a crazy world where babies run out of food and ailing seniors are abandoned by the government, but we can spend billions on foreigners .
JoAnn29 Jun 2022
Calling APS is a last ditch effort. You do not want the government in ur life if you can help it. For now, she is asking about AL as an option.
kristina65 Jun 2022
Aelvan, I am sorry about your situation and I have almost the exact same dilemma. My husband is 79 and has a neuromuscular disease that has weakened arm and leg muscles to the point where he is unable to get up when he falls. I have to call emergency services to come and help him up. It has also become more difficult for him to get up from seated position unless he is sitting on a high stool. Transferring from the walker he sits on most of the time will soon become too difficult for him. I have to assist by pulling him up, so transferring from the car, toilet, etc., will soon become impossible without additional assistance as I am not strong enough to do it alone. I see that people are advising you to look into assisted living or nursing home, but my husband is totally against moving. I can't see any othe option than to have a full time live-in person, but this is extremely expensive and is not covered by Medicare or by our other health insurance. To have someone come in just a few days a week, is not helpful as he will need assistance throughout the day. Have you had any other thoughts on this? I am at a loss and people in general don't understand the issues, including my husband's GP.
Fawnby Jun 2022
He needs assisted living whether he agrees or not. How is it possible that your needs don’t count? Ask him that question.
Sibby58 Jun 2022
You can certainly visit an assisted living facility to see what they offer. At the facility where my mom is, there are some couples living there together. So many activities, and your husband may qualify for some pt visits which could help. Actually he may benefit from PT or OT right now, at your home…ask his doctor. My mom had PT at home while she was living with me.

cpell122112 Jun 2022
I hate to be the bearer of bad news. It's time to consider a nursing home. An assisted living is for people with at least some mobility independence. You might also have to consider him using a wheelchair from now on if his balance is that dangerous.
I know the idea of given up your independence leaves a sour taste in your mouth. I've been disabled since the day I was born, and been in a wheelchair my entire life. I had to fight with everything in me to become independent ever since I can remember. Eventually, I did come to the point were I could live on my own I even got married. Then, one day it started. I had an aide come in everyday to help me for four hours and I was able to take care of myself the rest of the day. I started falling all the time even holding on to a bar. On top of the disability I've had all my life, I developed arthritis in my knees. Since I was already unable to walk, I was not able to have knee replacement, since this required me to be able to walk afterwards.
I had to swallow my pride and give up my apartment and the independence I'd worked so hard for, and moved into a nursing home. If your husband can dress himself and be a little independent in a wheelchair, an assisted living MIGHT be an option. But, if your husband needs more hands-on help, than a nursing home might be the answer.
See if you can get in contact with a rep. from APS-Adult Protective Services-and set up a meeting to discuss your options. Your husband's PCP might be able to give you references to agencies that might be able to point you in the right direction as far as insurance coverage, another thing to consider, and the right placement options that will put both your and your husbands mind at ease.
All The Best,
Colleen P. Pell.

Taarna Jun 2022
If you can not get him up after a tumble
and/or you must leave him unattended to run errands or work....
it is time to seek other living arrangements or bring in help.

AngryMom Jun 2022
Does he have neuropathy in his legs? My dad does and his legs will suddenly give out and he'll fall. He can't get up because his legs will not work. After a little while he'll be fine. I have to call paramedics to get him up. I'm doing my best to take care of my parents. He wants to stay in his home. Luckily, I'm practically next door.

GardenArtist Jun 2022
Writing from experience, the upper body can be strengthened through exercise, especially arm exercise.  He can do arm exercises sitting down, and could even benefit from one of the exercise bicycles which provide a good workout for arms and legs.

They're reasonably priced, ranging from around $30 upward for more sophisticated models.   They can be put on a table and anchored with a heavy weight for arm use (so they don't slide around on the table), or on the floor for pedaling as with a bike.
cpell122112 Jun 2022
I'd forgotten about the arm bike. That's a wonderful idea.
AlvaDeer Jun 2022
I think you are telling us that you recognize that for you the time is approaching. This is an individual decision that only can be made by each individual caregiver. I would recommend you remain as realistic as you are able in how much longer you can do this. We all have our limitations and they should guide us. Remember that the grief you feel is NOT related to guilt. Guilt infers that there's a real choice here, when there is not. Not everything has a happy fix-it. Ask your doctor if there is any chance that a PT consult might help delay this, though realistically I think it may not for long. I am sorry and wish you the best.

TChamp Jun 2022
It's obvious that he needs constant assistance.

Isthisrealyreal Jun 2022
Arlvan, welcome!

Sounds like now would be a good time to start looking.

I figure when you start asking when, it is the time, because so much is going on that is to much for 1 person to deal with.

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