This week I was told to move my mom to a long term care facility...while in the same breath the Dr told my mom to enjoy her life as much as she can.
I don't see it possible for one to enjoy their life in a LTC home especially when we can only afford ward care. I don't want my mom's final weeks months or years laying across from another watching them die.
She is currently living in semi private assisted living. She tells me she's lonely and bored and just waits for each day to end so she can do it again. So sad. Due to distance I can only get there once a week and it's usually to go to her Dr. Not much time for fun visits.
Most of me wants to try moving her in with my husband and I. We both work from home and have her dog living with this. We have room to give her her own room. With the money we would save on her rent we could put towards home care. Part of me is afraid it will be too much to handle.
I cared for my late husband at home. He had esophageal liver and brain cancer. It was hard but he was always surrounded by love and died at home with me by his side.
Does anyone care for their loved one at home?
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bluehoo
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I care for my husband with PSP at home, he is unable to get out of bed, feed himself, double incontinant, just about understand what he is saying, I am on my own, have 2 carers come in in the morning and again in the evening, I wouldn’t have it any other way, I know he feels love can have what he wants when he wants, but it is hard, both physically and emotionally.
Big decision for you but you will make the right choice for your mum and your family.
I cared for my husband at home and it was a challenge, but also something I'm deeply glad of, and gives me great comfort Since I lost him.
I had enough home support, and community assistance to make it work. You have to assume it will get worse, so will you be able to access enough home support that you aren't a full time caregiver? How will your husband feel about the time you dedicate to her, and her constant presence,? Some can handle it, some not so much. How far along in the course of psp is she? Are you prepared for how long it could be? Are there any dementia issues? Is she likely to take depression or anger out on you? (Something that seems to be saved for when the carers have left!..)
It can be deeply rewarding and meaningful - at the same time, it can be extremely taxing to your own health.
I wish you good luck with your mum's health and your decision. xx
I cared for dad at my home for about 3 yrs. First couple were more assistance but last was 100% dependant care. Eventually I couldn't keep up with increasing needs and trying to balance my family's needs. We decided long term care facility was needed. Dad has been there a year now.
I cared for my husband until he died. I am glad I did but it was hard work. He could not be left on his own and help was needed. It would not have been possible for me to go out to work as he needed support at night.
My son wanted to remain at his home. Home was located in Los Angeles, Calif, USA. The first three years because of his DX we thought he had Parkinson's....always wondering why he was getting worst. End of his third year he was Re-Dx with PSP. I did not live with my son, about 10 minutes away, but would come in each morn and afternoon. With the PSP DX he/we now understood the deterioration. We hired a live-in caretaker five days a week ( I would come in about 5 hours a day, three in the morn and about two in the afternoon). I stayed with him Friday night thro Sunday night.
As my son deteriorated I had to bring in night help for the last two weekends of his life. I could not do the lifting that was required. I am 78 years old, then I was abt 75 years old. The caretaker was male, 22 years old. He did o.k. I can remember how little sleep I got on the weekends.
LOOKING BACK I HAVE NO REGRETS, only gratitude for being able to give my son what he requested, but that statement is "now " from a place of rest and 17 months of grieving.
If the doctor has suggested a move from ASST LVING to LTC....he is expressing a medical perception of her deteriorating condition. So LTC may well be in her future, whether or not now you bring her to your home.
I believe there are few decisions that cannot be reversed. If your mom is verbal and can get around with assistance and a walker, I would suggest bringing her home. You would want to discuss this with her....that it is not permanent move, that you would like to bring her home for 3 months, 2 years, ???? etc,.... until you deem that she would get better help and be better attended in a LTC facility. See what she says, but make it clear that the move is NOT permanent, just as she is now (because of her condition) being asked to be moved from ASST LVING, so being at home, when it no longer works, will require another move. The thing about PSP is that it can turn on a dime. My son seemed fine until his 2nd bout of ASPIRATION PNEUMONIA. He came home with a PEG, seemed to be o.k., then started to deteriorate rapidly. 5 weeks later, at age 55 years old he died.
Perhaps bringing her home will give both you and your mom a greater appreciation for LTC.
Available care and cost is different depending on which country you reside.
Best to you............Whatever the decision it will be the best one, and it can always be changed.
The circumstances of the patient and their family environment can be so different that no recipes can be given, only suggestions, and in each case the direct responsible of the patients have to make a decision that, perhaps, is wrong and must be rectified.
My criteria at this time, with the data and experiences I have is:
1) Where the patient will be better is in a family environment. If it is in the patient´s own home it would be perfect but it is not always possible.
2) There are usually one or two main caregivers where the responsibility and the notable effort of managing the new situation 24/7/365 will fall.
3) It is essential to surround patient and main caregivers with enough trained people for help. In our case, after 6.5 years from the first symptom of PSP, a person who lives with the family and dedicates himself to caring for the patient (gymnastics, clothing, hygiene, meals, etc.) from Monday to Friday, a person that helps to manage the house and make the meals (2 to 4 hours / Monday to Friday) and another that covers the weekends. Logically you have to find more people for the corresponding holidays. The system is very expensive but equivalent to the cost of a residence.
4) Do not rule out sending the patient to a temporary residence or permanently. Aggressive episodes or dementia, exhaustion of caregivers, special medical care, particular circumstances of the family, etc. They can advise taking that difficult decision.
5) Main caregivers have to take holidays also. It is essential.
6) Do not forget this phrase from Heady, a contributor to this "chat":
"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
By private internal mail I send our experiences with the desire that they may be useful.
I retired early to care for my wife whose needs increased to the point she needed full time care. She remained at home until her passing. I think a spouse is different, just as you cared for your late husband. Personally, I would not want my children to care for me as I cared for my wife. No matter how lonely I might be.
My concern is that this disease has forced you into a no win solution. I hate this disease. Just as others have said, do not store guilt with whichever decision you make. A mother’s love for her child never fades.
Prayers of wisdom, strength, and comfort coming your way,
We moved my mom into our home three weeks ago. We had been in a clinical drug trial that wasn't helping and she could no longer live alone.
We asked for a hospice referral (we are in the US) and they are great. A nurse comes every week, comfort meds are supplied at no charge, all assistive devices too. Plus if we needed it, we could get a home health aide for a few hours a day (also at no cost), and we have a wonderful volunteer that comes four hours a week just to be company for my mom so I can get a break. If you are in the States, ask the doctor if they will refer. Supposed to be terminal within six months, but the social worker says as long as they show a steady decline, they can stay on it until they die... whenever that may be.
I cared for my dad in my home for 2 years before moving him into a LTC facility. My husband and kids were very supportive and helped out as much as they could. As his needs increased it became very stressful on our family. Ultimately it was the continuous falls affecting his safety that helped make the final decision. LTC facility was just safer for him. I considered quitting my job to stay home and care for him but it just wasn’t feasible. It was definitely a difficult decision.
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