What is next

BonnieALZ

New member here
Spouse is somewhere in 5 or moving into 6of the seven stages. What is coming next? Is it time for respite care? She just said she did not know my name or that we are married. Sleeps all the time ,moves slowly, eats little. Takes her meds if I am there to watch. Showers when I remind her but now needs help with most of that
Not yet to bodily function issues. Cannot complete a thought. Shadows and task. I'm to only caregiver but I can do a lot. Opinions on when to bring in support are welcome. TY.

Michele P

https://alzconnected.org/discussion/75385/what-is-next

Welcome. I am sorry you are here. Others here will tell you to read The 36 Hour Day. It will help you prepare for what’s next. I highly suggest that you get a plan b in place immediately. This will involve finding in home care and touring memory care facilities to place your loved one on the waitlist. If something happens to you and you can no longer care for your loved one, you need a backup plan. Make sure that you have a gps tracker on your spouse. Notify your local police or sheriff’s department of your spouse’s condition. They have Project Lifesaver which will place your spouse’s picture and background information in a central database and allow for gps tracking through a watch they provide in the event your spouse gets lost or is missing. I am assuming that you have seen an Elder Law attorney and have taken care of all legal documents. If not, do this immediately. Come back here for help. Everyone is supportive and extremely helpful.

Quilting brings calm

Levels of care:

Respite care is temporary care in a facility to give you a break of up to 30 days. Home health aids can be hired to give you a break of a few hours multiple days a week. Memory care is relocating him to a facility specializing in care for dementia patients that are at the level he is. Usually for the rest of his life.

Hospice care is probably what you need here ( respite care can be part of that). Hospice care is also for dementia patients at this stage. Can be done at home or in memory care facility. However hospice care requires that you stop invasive treatments and select medical care to keep him comfortable until he passes. Ask his doctor for a referral if you don’t know a hospice agency to call yourself.

annie51

Welcome to the forum. You will get valuable information and support from this group. You definitely need a plan B in place. I was in your situation being the only caregiver and I had no children and no family close by. My plan B was going to be a memory care facility. While investigating those, I tried some in home caregivers and the third try worked well to give me a break a couple times a week. Another option is adult day care which provides socialization and engagement in activities. It’s better to try some type of respite earlier rather than later, in my opinion, if only for your own sanity. Your role will get harder later.

Timmyd

What you describe sounds very familiar to where I was at a couple of years ago. The things that hit me hard were

1. Realizing I needed some in home help. When DW could not be left alone but could not go with me to the grocery store. Depending upon where you live, there may be a lot of options or few options, but I would start looking at some in home care for a few hours a week, and see how that goes. It made a huge difference for me. The big decision for me was private pay vs agency. There are pros and cons to both.
2. The next thing that hit me pretty hard was incontinence. I understood it comes for all ALZ patients but I was not prepared (are any of us?). My advice here is to act quickly once you start seeing signs. Don't live in denial or put off the adjustments. Act sooner rather than later once you start seeing clear signs of incontinence.

Jeff H

Your spouse sounds exactly like my wife. The first thing I did was see an elder law attorney to update our Will, Power of Attorney, and Healthcare Directive. The attorney can also protect your assets so when long term care is required it won't deplete all of your assets. Google some elder law attorneys in your area and look at their reviews. You are not alone.

SDianeL

welcome. Glad you found us but sorry for the reason. One thing we say here is that if you’re asking it’s probably time. Caregiving is mentally and physically exhausting. I would start with 4 hours of respite in home care per week and see how it goes. The first time I stayed home with the caregiver. The next time I left but not for the 4 hours. The third time I left for 4 hours. I told my DH that the help was for me to do light housekeeping. I would also have your DW evaluated for hospice. They provide so much help, equipment and supplies and Medicare pays. They also have counselors and clergy for support. They will reevaluate her every 6 months.

BonnieALZ

https://alzconnected.org/discussion/comment/266246#Comment_266246

Thank you very much for all of your advise- I have all the legal doc for two years now. A TRUST is almost finished to care for her in case I am not here. I will grab the 36 hr Book to prepare for next step. I 'll get in touch with local group for in home. I have both keys to car - Cameras in house and on door. Life 360 ..

Thank you - God Bless

BonnieALZ

Thanks to all for all of this wonderful insight - before the signs were shown , I obtained the legal docs - I started to work on a Trust to manage her finances - I obtained a "long term care policy " for me. I grabbed a couple of grave plots and just about done with pre planning- The 36 hr Book will help - I just need to get started on the in Home care . She cannot get access to drive and I keep keys for me to get back in because she has started to lock doors - I have many pictures for her to relate and put inside and door cameras up as well as low lever night lights - The problem that bugs me the most is why her family just stay away and do not call. Biggest excuse I hear is they just get sad when they talk to her. So , I get to do it all and that is okay . Thanks to all this great feed back as that is what I was needing.. I am sure I will post updates as the world is ever changing - God Bless all……

Timmyd

https://alzconnected.org/discussion/comment/266332#Comment_266332

Managing the family members who contribute so much less that you would expect or hope for is hard. That is a subject that comes up frequently in this group.

This is my approach. I often fall short of my goals. But here they are.

The disease has already created an enormous level of unpleasant emotions (sadness, grief, despair) in myself, DW, family, and friends. I am not going to do or say anything that is intended to add to that pile. No guilt, no shame, no snark. Any contribution I get from any source is met with sincere gratitude and appreciation, regardless of how short it might fall of what one might expect. People who aren't involved who I think maybe should be: I either tune them out by spending no thought cycles on them, or I try to empathize with their circumstances (meet them where they are at).

Carl46

Bonnie, it is never too soon to grab all the help you can get. This is a marathon, not a sprint, and you need to husband your strength. When my wife went to memory care, her doctor advised it - and so did mine. Little things like being wakened several times a night wear on you when it is night after night.

Jeff H

https://alzconnected.org/discussion/comment/266332#Comment_266332

"She cannot get access to drive and I keep keys for me to get back in because she has started to lock doors"

Yes, you have to watch out for this. My DW did the same to me and I now carry our house keys on me always.

BonnieALZ

https://alzconnected.org/discussion/comment/266334#Comment_266334

agree . Im too mature to use energy on anger or frustration on those that are expected to get involved. I was raised with the God,Family ,Country mindset. I always preached that blood is thicker than water and family will always be there where even best friends may not. I helped my family in times of need. I help the DW family when they were in need. however, when the DW ( with dementia) is about to lose all memory of her family ( three children) they are no where around . No phone calls, no home visits , nada.

But , it is not an anger or frustration that I spend my energy on. It is a mere question of why? is this a normal behavior seen from this group? Would they come around if she had terminal cancer? is it this condition that keeps family away? I have never been around anyone with dementia related to ALZ. I'm new to it. I would never have guessed this was like it was some contagious illness.

Amazing- there is one child's wife that offers help and communicates . There is light out there.

Im a survivor - thank you for your thoughts and comments - God Bless

Timmyd

https://alzconnected.org/discussion/comment/266359#Comment_266359

These are just my thoughts based upon my life experiences. It is fairly common for close family members to be heavily involved, and also common for them to be not involved. I have also seen things in between.

About 12 years ago my mother was diagnosed with terminal cancer and died about 6 months after that. It was a short journey compared to dementia. She was the matriarch. There were many family members who disappointed me in their lack of interest in my mothers' condition. Other people stepped up. In general, I think cancer is easier because people can still connect. What I have seen with dementia is people try to connect and fail in a way that is very scary to them. That makes it harder to try again and the contact eventually falls away. On the other hand, there are people who I may not have expected, but stepped up and continue to help in the most amazing ways. Even when DW and myself make the rare public outing, it might be someone like the receptionist at the dentist or a clerk at the grocery store who "gets it" and is able to really shine bright, if only for a moment or two.

There is this quote I ran across on the subject that I found interesting:

"Let people do what they want to do, then you will see what they would rather do.   That will answer the questions you have...."

H1235

I’m going to show my age here. We live in a time where people are more concerned and aware of their own emotional health. Which seems good, but a conversation with a person with dementia is stressful, uncomfortable, heartbreaking, sometimes hurtful, sad, confusing…. What I hear is, “it’s just to hard, I can’t do it”. Do people have no emotional strength at all? Or is it an excuse? The people on this site have have it.

tonyac2

My DH kids aren’t really involved in his life. They drop by every couple of months to say hi - never for respite or other help. I think it’s too difficult for them to see their dad in this state of decline. My thought is if they’d come over more often it wouldn’t be such a shock to them. But sure, visiting every few months to going to be disturbing. I hate where we are and I’m sure they do too.

ARIL

I appreciate this conversation. In the past I spent a lot of emotional energy on frustration with family who did nothing, and on random friends who would say “It’s just too hard for me to see him this way. It hurts so much that he doesn’t know me anymore.” Aargh. This is so not about you!

Now that the situation is different (in MC now) and the disease has progressed, I can feel a little more understanding of others, although I am still disappointed…and I am better at noticing the people who can show up in a meaningful way. Today I was visiting the MC and saw one of the nurses salute my PWD. He beamed: “You saluted me. I didn’t even get much of that when I was in the Navy. I was saluting other people.” And everybody laughed, including my PWD.

Little acts of care matter so much: I see you. I know you. We are human together.

????

My wife's Neurologist tested her in December. He said she was at 4.5 on a scale of 7. He said typically the patient enters a Memory Care Facility at 5 or 6. Some of this depends on how the caregiver is doing. I plan on keeping her at home as long as I can. At the advice of our Doctor I did get my wife on a waiting list at a Memory Care facility that we had picked out. If they call with an opening we can turn it down until we need it.

BonnieALZ

Good advice and planning- I know the most difficult decision will be me making that move. I plan to keep DW at home for as long as possible- I begin to start my contacts for in home care until her needs are too great . I may not have much choice on that timeline.

The neurologist has yet to provide us with a score - I just get a mild/ medium/ severe comment.

After reading the 1 to 7 levels my DW is moving from 5 into 6 but how fast or slow is not known.

God Bless

Michele P

Make sure that you fund the trust asap and change the names of the accounts to the trust. Until it is funded, the trust is not valid.

mroberts8

My DW is in the same phase. I am sole caregiver with no family in the area. Last year I decided to engage home aides for two mornings a week and it really helped. It also is a visceral glimpse of the road ahead when you can no longer provide the level of care that is needed. Start now with some home help and begin to research memory care options. Both will help you decide how the future might or should unfold for both of you.