Happening to fast

KeithH

Hello all,

I don’t post much, but do read others situations which are similar. To refresh, I’m 47. My DW is 55. She was diagnosed 4 years ago with early onset. I noticed changes roughly 3 years prior, making her 47-48 years old. Over the past 11 months things have progressed so very rapidly. She has lost all control of bodily functions. She has to be fed roughly 30% of the time. I have to bathe, dress, and groom her. I made the painstaking decision in February that she needs full time help. My health is declining and I am losing my job in April. Attorney and financial advisor have been called and working on the financial side of things. DW had appointment on Tuesday with geriatric doctor, Psychiatrist, and social worker. They all agree with me and applaud what I have done and provided for her, but she is now in “end stage”, with severe Alzheimer’s/Dementia. Social worker contacted local Agency of Aging. Agency of Aging called me yesterday to set up a phone assessment of wife for placement at MC facility. Assessment is set up for a week from today.

I just can’t breathe and feel like everything is just happening so very fast. I’m not in denial about the situation, but feel is going so so fast.

Doctor has said that as fast as things declined in past 11 months, they are only going to go faster the next 6 months. He said according to her markers and current decline, he feels in next 6 months she won’t have any mobility and will be complete feed. Again I just can’t believe how fast this is all happening.

jfkoc

So young...too young. Horrible decisions to make. Please know that we are here to walk with you.

Ed1937

Keith, I'm sorry. Don't forget to take care of yourself now. I hope things go smoothly with the transition.

Donr

It might be good for you to set up an appointment to see a Psychologist. They can help you as you go through the times to come.

Marta

Keith - I am so sorry for what is happening.

It sounds as if she may soon qualify for Hospice, if not already.

Even if you are placing in MC, Hospice can come in to the MC to help her,and you, navigate the final months.  They would be a tremendous help for you.

Her geriatric doctor could order Hospice, or you, yourself, could contact them to have her assessed.  Hospice services are covered by Medicare.  Although room and board at the MC would not be covered, the RN, social worker, chaplain, and nursing assistants, and even volunteers to sit with your wife, while you take a break or get a meal, are all covered.  Hospice also offers grief counseling.

I used each and everyone of these hospice providers while my husband was in their care.

Yes, it is happening too fast, and you will be amazed at the grit that you have to bear it all, with appropriate support.

M1

I agree with Marta Keith, she will almost certainly qualify for Hospice.  Don't see why you can't ask about it at the same time as the MC assessment.  Good luck.  Look after your own health too.

Jo C.

Hello Keith; there are not words sufficient to say how sorry I am for what is happening; please do come and Post as often as you wish; we here really do care.  You have been doing a herculean job of caregiving, now it is time to let others step in and assist; from what you write, this is a good and necessary decision you have made.

So very young; the both of you, and so much on your plate.  You are a very proactive person and have some important professionals assisting you with the financial planning side of things; that is very wise of you.

This really is a difficult time with so much involved on both a practical and psychological level; Marta's advice is really spot on.  It would be such a help to have Hospice step in as added assistance.  As Marta said, Medicare covers this; if your wife is not yet on Medicare, other insurances most often cover Hospice too.  That would be something I would want to look into with my insurance policy if this were happening with my Loved One.  Knowing how they work, I would not hesitate under your circumstances; in fact, I  have used Hospice with one of my dear LOs; it was such a blessing and also did much to put my own mind at ease.

Hospice will go into care facilities and they are extra eyes, ears and hands on behalf of our Loved One as well as being support for the spouse.  I cannot say enough about how welcome their assistance and oversight was.

Your stress must be monumental, please do not forget to have a physical for yourself and counseling can be very supportive in such circumstances if this would be something you are open to either now or later.  In the midst of such life altering changes, do not forget to look our for your own health too. 

Please come and let us know how you are and how things are going, warmest of thoughts are being sent your way; we will be thinking of you.

J.

Cynbar

I also agree that your wife sounds as if she is hospice appropriate, and their services would be a big help to both of you. Most facilities have a preferred hospice that they work with, their staff is in the building often and they have a good working relationship with the facility staff. Ask about this during the assessment. You do have a choice of hospice companies but the preferred hospice is a good place to start, and does have advantages.

Jeff86

Thanks for posting, Keith, and so very sorry to hear about your DW’s rapid progression.  Others here have already provided excellent advice, so I’ll offer enormous empathy for you at this terribly difficult time.  

Although I am sure it was very painful, the decision you made to place your wife is sound and right for both your DW and yourself.  You have carried the caregiving burden for a long time, and it is time to share it.  And of course you must take care of yourself, too.

Wishing you strength and courage at this challenging moment.  We stand with you.

tjrjr

Keith

 Your situation and DW age and decline is as if you copied my DW timeline. the only difference is I'm 56 and we have a24 hour live in aid. I was at the point you are now last January. Finally found a MC facility that would take our insurance and wasn't just a locked room to keep patients from moving around. When covid hit I decided to keep Jennifer home. I don't think I would have kept my sanity not being able to visit everyday. we are modifying the house so that a wheelchair and ramp can be used to go outside in nice weather. She has a really bad time going up/down the 4 steps to go outside and soon she won't be able to walk at all. I feel your pain and at the same time relief knowing someone else will be helping . You need to talk to a psychiatrist/psychologist to keep your sanity. I haven't posted very much recently but seeing that we are not alone in our struggles really helps. sorry to ramble on but take care of yourself.

Tom

French

Keith, 

You have to consider everybody and in particular your children who are very young. Whatever you do, it is sure you will do the best for them.  You can’t let their care and education to somebody else, they need you. 

I imagine you can feel guilty. We are reading here the devotion of spouses who are wonderful caregivers. But we are all in different situations and doing the best we can do. We all are sure you do the best for your family whatever the decision.