Considering having mom with dementia live with us

[petitfleur]

Just letting you know you are in my prayers. I am just a few steps behind you in this. My mom is in rehab too and I noticed a rapid decline in her memory. It is very alarming.

I have lived with an advanced ALZ patient before when I was about 12. I am not sure I could do that with small children. Older kids it’s ok, little ones no way.

No advice just prayrs.:hug1::console:

 

[JRKH]

Easter Joy’s advice is sound, but will take exception with one thing she said.
There is a point at which you will be unable to provide the kind of palliative care and professional attention that your mother will need. You may find, however, that having respite care in your home might be less expensive and less upsetting to your mom for some period of time before she needs out-of-home care. Do be ready to move her elsewhere, though, if that is necessary. There was a day when all of this was done at home, but that was also the day when there was little difference between what a professional nurse and a well-trained layperson could do in the area of day-to-day care.
In the case of my Alzheimer’s diseased father, my mother kept him at home and that is where he died. And my mom weighs about 100 lbs soaking wet…
So it is not always the case that they will have to be placed outside the home.
My intention also is to keep my lady here with me in the home that we had built for us.

There is no doubt but that it is difficult and that many families will need to opt for placement outside the home. However, many families are also opting for trying to care for their loved one at home as well. Much of the “professional help” is coming available in home - Hospice is a godsend in this area.

All of us are saying essentially the same thing though. Each family must make their own decision based on several very interconnected sets of criteria. Personalities, home set-up, work situations, availability of family/friends support system, professional services available, and financial issues all need to be balanced.

Peace
James

 

[EasterJoy]

Easter Joy’s advice is sound, but will take exception with one thing she said.
There is a point at which you will be unable to provide the kind of palliative care and professional attention that your mother will need. You may find, however, that having respite care in your home might be less expensive and less upsetting to your mom for some period of time before she needs out-of-home care. Do be ready to move her elsewhere, though, if that is necessary. There was a day when all of this was done at home, but that was also the day when there was little difference between what a professional nurse and a well-trained layperson could do in the area of day-to-day care.
In the case of my Alzheimer’s diseased father, my mother kept him at home and that is where he died. And my mom weighs about 100 lbs soaking wet…
So it is not always the case that they will have to be placed outside the home.
My intention also is to keep my lady here with me in the home that we had built for us.

There is no doubt but that it is difficult and that many families will need to opt for placement outside the home. However, many families are also opting for trying to care for their loved one at home as well. Much of the “professional help” is coming available in home - Hospice is a godsend in this area.

All of us are saying essentially the same thing though. Each family must make their own decision based on several very interconnected sets of criteria. Personalities, home set-up, work situations, availability of family/friends support system, professional services available, and financial issues all need to be balanced.

Peace
James

Yes, sometimes this is possible, so it is over-reaching to say that it will certainly be impossible to care for a demented patient until the end of life. Still, our uncle became combative and a real danger to his wife. Other dementia patients have trouble emptying their bladders and need massage for that purpose. Pain assessment and management is not always optimum at home. There are other treatments that can be done in a professional setting that would otherwise require hospitalization, which may lower the chances of a patient’s survival and continuing level of function, compared to the care center. If a top-notch program is available, there is a point at which they can do more than you can. My point was that professional nursing and professional hospice are in fact professions. I would say that providing end-stage dementia care at home is more difficult for a layperson to achieve than, say, home schooling. Not impossible, but no one should feel inadequate as a family member if their demented relative’s needs get well beyond their ability to meet them.

I mean to say that it is not just a matter of being willing to sacrifice and endure, a matter of how much you love them. It also has to do with identifying their needs against your capacity, and being honest about whether their needs will be best met by staying with you. You don’t want to let guilt or the desire to provide end-care yourself prevent you from getting a family member better care than you can provide, if the task grows beyond you. That takes both education and honesty.

We got some very good advice from just a one-hour lecture on caretaking for dementia patients. It was given by a geriatric nurse, and she had some great advice on how to manage keeping a parent as safe, healthy, happy and as comfortable as possible at home for as long as possible. It takes a lot of burden off to know how to handle the problems that can come up.

 

[JRKH]

EasterJoy,

I’m glad that you were not offended by my comments. We are thinking very much alike.
I know that the OP is very concerned, and I just want to make sure that she, and anyone else looking in, know that there are many possible options.
Neither of us are pushing any agenda and I hope everyone realizes that. Just putting information out there.

Peace
James

 

[EasterJoy]

EasterJoy,

I’m glad that you were not offended by my comments. We are thinking very much alike.
I know that the OP is very concerned, and I just want to make sure that she, and anyone else looking in, know that there are many possible options.
Neither of us are pushing any agenda and I hope everyone realizes that. Just putting information out there.

Peace
James

Offended? Oh, no, your family’s experience was exactly applicable, and encouraging for those who want to do it but may fear that they can’t. I think the stress is lower, though, if a family can assure themselves that it is also OK to conclude that other care would be more appropriate, because sometimes that is objectively the case.

They can try if it seems reasonable that they can do it, and if it doesn’t work out, it is not something they ought to punish themselves over. You want to count the cost so you can avoid a foreseeable problem, but it is OK to give yourself that flexibility.

 

[JRKH]

Offended? Oh, no, your family’s experience was exactly applicable, and encouraging for those who want to do it but may fear that they can’t. I think the stress is lower, though, if a family can assure themselves that it is also OK to conclude that other care would be more appropriate, because sometimes that is objectively the case.

They can try if it seems reasonable that they can do it, and if it doesn’t work out, it is not something they ought to punish themselves over. You want to count the cost so you can avoid a foreseeable problem, but it is OK to give yourself that flexibility.

 

[filiaecclesia]

Dear Friends:

Our Lord has “forced my hand”: after a week at the rehab, my mom’s strength is a little bit better, but her emotional state is awful, so we’ve decided to bring her home this Friday. The Medicare provided hospital bed, walker and wheelchair have been ordered, and I’ve contacted the resources you all so kindly have suggested. I don’t know how I’ll handle what’s ahead, other than to say that when I told my mother that she was coming home soon, she beamed and finally slept soundly for a few hours. Moments before she was anguished and said, “The Lord has abandoned me.” I told her, “No, Mom, He never does.” And, indeed, He never does. He gives me and my family the strength to do this, and her the strength to persevere. His ways are NOT our ways, but somehow, if we even just attempt to cooperate, His ways can become the path of grace unimaginable.

I would never say that this is the only way for everyone. Maybe if my mom wasn’t Italian and didn’t have so many expectations of her family, and if she had a home of her own, resources, a husband, etc., our choices might have been different. As dear St. Augustine says, He loves each one of us as if there is only one of us. You are all unique and special to Our Good God, and you should dump the guilt as soon as possible in regard to decisions made for the well being of your aging family members. Be kind to yourselves, be kind to them, and let God be God!

Please pray for me and for my very good husband who is willing to embark on this journey with me. I will pray for you, and I’m very grateful for your swift and thoughtful words - you have helped and guided me more than you know.

All good,
Audrey

 

[JRKH]

May God in his mercy, give you strength and courage as you move ahead.

If I may share one or two things from my own experience.

When my dad was nearing the end of his journey, my mom looked at him and then at me and said, “He’ll go straight to heaven. No matter what he’s done in his life, he’s done is purgatory right here.”
A beautiful sentiment and very true. Mom, and to a lesser extent the rest of the family, accompanied dad on his journey into and through purgatory. Something both dreadful and at the same time beautiful.

Similarly, in my own journey with my lady, I have learned more about patience, understanding, forbearance, and Love than I could have ever learned in the normal course of my life. Through this journey God has explained how He has shown all of these virtues with me. Not sure if I can explain but I’ll try…
As your loved one fades, they will become unable to understand things that you believe they should be able to understand, after all, the understood it last week. But no matter how patiently you try to explain it, they just cannot understand. They become angry, defensive, “stubborn” while we become frustrated and cross.
God showed me, to my infinite embarrassment, that this is just how I had been acting as he tried to get ME to understand things for many years that I was just not hearing.
The bottom line is that, if God could be patient with me for more than 30 years before I came back to the Church, I should be able to be patient with my dear lady.

Audrey, you are a brave woman who has a wonderful husband. Make sure that you and he stay close. Don’t let him get lost in this. Make sure he knows how important he is to you - your rock, your companion, your strength. Let him know that you love him even more for his courage and his patience in taking on this great task of Love.

Oh and one last thought. Make sure that your pastor knows. He’ll probably stop by for a visit and bless your mom and make arrangements to have communion brought to the house etc.

Guess that’s all for now…

Peace
James