The decision to place a loved one in a nursing home is difficult at best. One of the major reasons for nursing home placement IS mental confusion.
I've watched couples and families agonize over this decision and don't wind up making the decision for placement until the healthy spouse has a breakdown or other medical emergency. But, once the decision is made and the placement is accomplished, it can oftentimes be the best for both the patient and spouse. The more scheduled atmosphere of the facility, along with multiple personnel for care, regular activities, etc., encourage interaction among residents, gives the patient things to do and occupy his time and energies and allows the health spouse to become a spouse again rather than a nurse/caregiver. There is often an adjustment period but depending on the quality of the facility, this can be short-felt. Take the time now to investigate facilities near our home so that the decision is not made in haste.
I need a little advice regarding my mother who has been the primary CareGiver for Dad (74 yrs. old, 20+ yrs. w/Parkinsons). Mother and Dad have been married for 49 years. Mother has been an incredible CareGiver, wife, mother, grandmother, and businesswoman, and we all marvel at her strength and devotion.
For the last 3 and a half years, we've also had 24 hour live-in paid CareGivers because Dad has been increasingly unable to take care of himself, and Mother, while strong, is aging and has some health concerns of her own (cancer survivor among other things).
Dad's Parkinson's has finally gotten the best of him, and he is pretty much confined to bed and his dementia has developed to the point that we can no longer have a cogent -- if any -- conversation with him. He needs help with every possible life function, and he has some secondary medical issues that were beyond what we've been able to handle at home, even with the additional help and home health services.
His neurologist, a great PD specialist who has cared for him over the last 20 years, said that it was time to put Dad into a facility. He's tried every drug combination, over and over, tweaking amounts, substituting medications, etc. Dad had a pallidotomy about 5 years ago that provided some help with his tremors. But the long and short of it is, he's now out of viable medical options.
Mother and Dad live in a small town, and the nursing facilities there are inadequate, to say the least. So after some investigation, and some heart-wrenching decisions, we settled on a place about 40 minutes from Mother's house, but close to her children.
Mother has her own real estate business, and at this point is unwilling to stop working (plus she wants to earn enough to help keep Dad in a good care facility). So, her time constraints and distance make it tough for her to see him everyday, although when the kids are there, we call her and she can talk to him on the phone.
Dad made Mother and us kids promise about 10 years ago to put him in a facility when he became unmanageable. But after two weeks of him being there, Mother is ready to try to take him back home because she doesn't want him to be alone, and she feels like she's given him a "death sentence." We believe that at this point if he goes back home, we're giving her one. (But we're torn by her grieving). She has been crying a great deal, and in addition to spending time with Dad, we've been doing our best to spend time with her, call her twice daily, etc. But it's really not having much effect.
So.... after you now have a condensed version of the facts, do any of you have any suggestions for us to help her through all of this? Any reference sources that might be good for her/us to read? Should she take him back home? (He's physically strong, but as I said before, unable to get around on his own or take care of himself in any way).
Thanks in advance for any suggestions.
We were fortunate that there is a very nice, new facility that is less than a mile from my house and less than a mile from my dad, but it was hard on my dad at first. I think going home to an empty house was especially difficult.
The first thing I did was to call up a bunch of my dad's friends and relatives and encourage them to call him. They all did, and they continue to call regularly and I think that helps a lot. One friend in particular was terrific -- as it happened, he needed some support himself and now he and my dad go out to lunch together almost once a week, which is really good for them both.
Even in the best of circumstances, CareGivers will tend to become somewhat isolated over time. This makes it even harder if the PWP goes to a care facility -- the social and support circle the CareGiver used to have may be gone. Their PWP is gone and there's a huge hole in their lives. Sometimes we adult children can help them fill it. It requires some effort from us, but the (former) CareGiver has to put forth some effort as well.
Of course, since your mom has to drive some distance to visit your dad, she probably feels guilty spending time doing something social for herself -- this may mean that you have to work even harder to get her to do it! Does she have any friends who might be willing to sometimes make the drive with her? Perhaps there are some shopping or entertainment opportunities near the nursing home that a friend could take advantage of while Mother visits Dad, and then she and the friend could enjoy the drive back home together.
Another alternative is for your mom to move closer to the nursing facility. I don't know the geography of your area, of course, so I don't know if it's feasible, but it's certainly something to think about. As one gets older it's a really good idea to be very close to one's kids!
I think the key may be to get her to understand that the present situation is probably the best one for your dad. I know my mom is a lot more comfortable in the nursing facility. (She complains a fair bit, but it's pretty obvious that it works out extremely well for her in innumerable ways.) If she is able to understand that a little bit, she may be able to see that she wants him home to benefit herself, not to benefit him. That is, she may want him home more out of loneliness than guilt, and she should solve that problem by doing something about her loneliness rather than by bringing him home.
Nursing Home Decisions may help in some way:
I have a friend who is going through the same process right now and though she knows it needs doing, she is having an awful time with the decision. Combination of guilt, loneliness and grief. She, too, cries a lot. She is going for counseling right now and has been put on an antidepressant. These take along time to kick in but seem to be worth the effort.
Billy Graham who has PD was quoted as saying, he had always been prepared for death but had never been prepared for old age. Think we all feel very much like this.
Is there anyway your Mother could find a good life care facility? Around here in Florida there seem to be many very good facilities with apartments for one spouse and assisted living or nursing home for the other. At least in that way she wouldn't feel so alone.
If she wants to keep working, think that's a great idea. I, too, have often felt I would like to go back to work at least part time, takes the focus off illness and gives a whole other perspective to life.
The hardest solution for you children would be to have her take him home, though may be the one you have to go through before she gives up on this idea. In this economy finding people willing to handle someone so ill is extremely difficult, no matter how much one is willing to pay.
Wish there was some really good solutions or advice to be offered and I'll keep your family in my thoughts and prayers.
It sounds as if your father is really not aware of what is happening and that he is really in the last stages of this disease. I am wondering if your doctor has suggested a referral to Hospice? They can be extremely helpful in helping your mother accept what is happening. The time does come no matter how hard we try, the disease wins. It is the process of your dad's dying that has made the move to the Nursing home necessary, but your mother feels as if she could keep from dying if she only has him at home. Hospice can help her work through all that. Also, sometimes, when events like this cause more depression than normal grief would suggest, a temporary prescription for an antidepressant can be extremely helpful. I wonder if your mother would consider that. She sounds like a normally strong person who is having a hard time letting go. It is a very normal reaction after 49 years of marriage. I know; we too have been married 49 years(almost). Also, perhaps there is a support group your mother could attend near her where she could share these feelings with others going through the same thing. I find it much easier to talk to my friends in the support group than to my unbelievably supportive children.