Timeline for Caregivers

losinghope

I wish I could give potential caregivers advice about when certain symptoms will appear. It would have been the most helpful for me to know when I started on this journey of heartache.

But there is no roadmap or time schedule that can be relied upon. When my wife was first diagnosed, at her request after realizing something was wrong, seven plus years ago in the summer of 2016, I was told by her doctor she might die in as short as two or three years or she may outlive me. She was 63 and I was 70. Now she's 70 and I'm 77 and the trip has been a horror story. Mainly because of the uncertainty.

Mild symptoms of memory lapses and confusion, noticed, in retrospect for at least two years prior to her diagnosis, became physical combat and aggressiveness, then passive decline in all mental ability. Finally, for the past two years, severe weight loss and the inability to care for herself in any way.

Physical health has only started to decline after losing 60 pounds. She is still able to walk and eat with assistance but eats everything, including soap, and coins or anything that fits in her mouth. Hospitalized last week for removal of 3 quarters and 4 nickels, I have had to lock all the rooms and empty the house of anything small. She wears a diaper for the past week but she will chew it if I am not vigilant.

I share these details because anyone attempting to singularly care for a patient should realize how bad it can be. Steel yourself. I wish I had known.

There are few choices in reality. Memory care facilities are extremely expensive. In my area $6,000/month is the bottom figure. Home care, even part time, is also costly. Other than veteran benefits or Medicaid which requires near poverty to attain, there is no financial aid.

I think I am nearing the end for my wife. Her symptoms are that of last stage but even that can last for a very long time. I already have trouble remembering her. She has become an empty shell. All I can do now is hope she does not outlive me because there is no one else.

gampiano

Dear Losing Hope,

I am heart broken as I read your post. My husband just passed away on October 14, and I was the sole care give until the last few weeks when I had to hire some part time help. It is a nightmare, and the exhaustion of the caregiver is beyond description.

Have you contacted your local hospice? They were immensely helpful and supportive, provided some respite care so that i could get a break, and we had them for a couple of months before my husband went in to a rapid decline. I strongly recommend that to you, and , as the end draws near, they are invaluable,

Please consider this if you haven't done it already.

I'm wishing you and your wife peace, and deliverance.

Maureen

Ed1937

What a first post! Thank you. I hope you know you have found a great forum. Even with only one post under your belt, you are now part of our family, and you will get a lot of understanding and support here.

Joydean

I want to welcome you also though I wish you didn’t have to be here! As I was reading your post I couldn’t help wondering do you really think you could possibly have anticipated any of your wife’s steps in this disease from hell ? It’s stated many times on this forum “if you’ve seen one person with dementia/alz then you’ve seen one “. Not every patient has the same symptoms. Putting everything in her mouth that’s one I haven’t heard about, I can’t imagine how you’re dealing with that! I hope you will keep posting because there are a lot of wonderful people on this forum. They have been a lifesaver for me. I have learned more from these people than from any of the doctors, books or anything else. They have lived this hell. My dh is entering stage 7 and I don’t think I could have survived this far without them. Prayers for you and your wife.

M1

Do call hospice, you don't need a physician s order for her to be evaluated. If they do not accept her you haven't lost anything and if they do they may be a lot of help.

charley0419

https://alzconnected.org/discussion/comment/186928#Comment_186928

I’m new but feel this group big help

ghphotog

Welcome and I hope here in this place you find the encouragement and inspiration to carry on as I have. It's a place we can share our stories and our daily trials without fear of judgement. Everyone here understands both sides of this coin from the dementia side to the caregiver side and even though things might be a "slightly" different version of crazy for all of us, we are all together on this trainwreck called "dementia".

Sorry I keep editing, as someone else said, my best proof reading is after I hit the post button.

As far as a timeline goes. I'd give anything to know how much longer one stage is from another. I sense we are approaching late 6 and even possibly 7 but then there are times I think we are still in 5 somewhere. There's no blood test to tell, no xray or mri that can diagnose "4, 5, 6 or 7. We only know we've reached the end when stage 8 arrives.

Neuro has diagnosed my DW with Alz and labeled her as "severe". What that means in terms of a timeline I have no idea and neither does he. That is part of what makes this so hard, not knowing where youre at and how much further you have to go.

Howaboutnow

I hear you. The seemingly never-ending “constantness” of this is too much. I have seen dementia in relatives and friends and been very close to some. Yet, I had NO idea what it mentally and physically required of the loved one doing the caring.

I apologize to my Grandma in heaven often for not fully understanding her journey with my Grandpa. I feel like I’m living part of her life, the part that always scared me. It scared me when I was young because i was naive. It scares me now, because I’m living it, I’m no longer naive, now I KNOW.

I pray for all of us.

nancyj194

Hi losinghope.. This is a great place to be. I am sorry to hear your wife is swallowing coins and whatever else she can. This disease is so unpredictable.

My husband was finally diagnosed in 2017, but I knew at least ten years before that that something was wrong with his memory. No one would listen.

When we went to an appointment with our primary care doctor in 2017,, it was a bad day for my husband and we finally got a referral to the university neurology department that specialized in Alzheimer's/dementia. After two hours of testing, we had a diagnosis of Alzheimer's. Finally...but I walked out crying. I knew what I knew before the appointment, but the diagnosis was still painful.

I agree concerning the hospice, If one place will not accept her another one might. We have to be proactive.

My husband is at stage six, I think. Recently he was able to draw the face of a clock when our primary care doctor's assistant gave DH a mini cognitive test.. He could not do that at least seven years ago and not at the neurology diagnosis appointment.

The last 6 months 'DH hyper focuses on the three clocks in the living room all showing the same time. Perhaps that is why or maybe his brain just clicked that day.

Some days I am tired and stressed. Other days I am glad I can do what I do, which is everything inside and outside.

Stay in touch. .

CStrope

I agree, this caregiving journey is like nothing anyone can understand until/unless they live it. A couple of weeks ago I took DH out for friday fish (it's a WI thing!!). A friend stopped by our table to offer words of encouragement and a hug. When I sat down, I noticed he had poured the melted butter meant for his fish into his beer. Without missing a beat, I scooped the congealed layer off the top and handed him back his glass. 3 years ago when we first received the diagnosis, I couldn't have imagined dong that, but now, these situations happen multiple times a day and you learn to just roll with it.

As for the bad effects of dementia on the caretaker, I've gained significant amount of weight, I'm extremely sedentary, and my Type II Diabetes which has been under control for years no longer is, and my A1C is 7.9! Stress is a magical thing isn't it!!!

losinghope

I thank you all for your comments and welcomes. I actually was here about six years ago but somehow lost touch. I posted once or twice back then. I don't know why it now says first post. Maybe the site has memory issues.

I'm not a big fan of this numbering system used for Alzheimer's. It used to be four stages now seven but they are inaccurate and truly meaningless since any one stage can last years and other only weeks. For example, My wife fell off a mental cliff in the first few months remembering only her early childhood. That lasted nearly five years with no physical ailments whatsoever. In the past one year she has declined so rapidly I have trouble keeping up.

The sixty+ pound weight loss, inability to eat or use the toilet alone, chewing clothes and eating everything and incessantly grinding her teeth and mumbling all day long. She cannot communicate at all. Her eyes are blank.

It's as if the beginning went fast and the end is even faster but the middle five years were a plateau.

I'm fortunate I am healthy relatively, at 77.

A word about memory care. I attempted to place her in a new facility close by. I was applying for military veterans assistance to the tune of about 1/2 the cost which was $6,000/month. Then, when the home was ready to evaluate her they said she needed to be drugged because she was "too active and needed redirection" which was their code for we only care for semi-comatose patients.

Be aware these places are a business and they want things to be easy for themselves, not necessarily for their patients. I was outraged that they expected me to drug the remaining spark of life out of my honey for their own convenience. Needless to say she is still with me and will remain so until one of us kicks the bucket.

I don't have confidence that she will make it to Christmas. I've prepared myself for it. She is noticeably weaker each day and starting to refuse to eat. We both agreed years ago to have legal documents drawn up including DNRs, Do Not Resuscitate. I will not turn her over to anyone else to make the decision for her or me.

This is one of the really hard parts. The end. I know it's coming. I have steeled myself to it as best I can.

valan2

https://alzconnected.org/discussion/comment/187007#Comment_187007

I know it is easy to say , you need to take care of yourself too, but it is true. Get a friend or family member to stay with him for 30 min ana hour to do a little exersize. Maybe a gym , walk in the neightborhood. You have to keep better eye on your dm. If you get sick what happens to both of you? It is hard to ask for help. I know it is hard for me too.

Beachfan

Dear Losinghope,

Please consider the several suggestions to call for a hospice evaluation if you haven’t done so already. The service would benefit both you and your DW, especially if you are attempting to care for her at home for the duration. You can get a good deal of firsthand information on this forum by typing “hospice” into the search box at the top of the page. You have nothing to lose and lots to gain. Stay strong; I’m praying for you.

charley0419

But my understanding is Hospic care is when you’re at very end.

Beachfan

Traditionally, Hospice services have been restricted to those patients in the last six months of life, however, with Alzheimer’s, that restriction does not always apply. Hopefully, others will chime in on this topic. Sometimes, a patient will not qualify for services with one Hospice provider, but another provider will deem the patient eligible. You will never know unless you inquire; it does not require a doctor’s order or recommendation. Hope this makes sense. Best of luck.

JeriLynn66

As a former Hospice RN, I encourage you to call Hospice for an evaluation. Thinking of you and your DW

maidie

Dear Losinghope, I feel so much for you. Every patient is a new patient. My husband was diagnosed at age 49, but problems started way before. This was back in the late 90's so things may have changed. He was so young and in good shape, that even though his brain was not good, his body was. He was a walker, and one night walked 20 miles along the freeway. Of course he had blisters on the bottom of his feet and had to be in a wheelchair for a while, which he totally did not understand.
However, all that considered, you should look into Hospice. It was a life saver for us. Our kids were 12, 18, and 23 at the time. Talk about tough, we had no idea really what was going on. But for me I found an online group and that was also a life saver. (my situation, I have a partner now, who is 85 and has Alzheimers and I'm going through this again.) I am 73, and have my own issues with is this fair?? Reach out to Hospice.

S. Lynch

Dear Losinghope,

Thank you for sharing your situation. Praying for your LO and you in this part of the journey. My DH was diagnosed at 63, and is in his 3rd year. I think it is the constant grieving that wears me out. We were holding ground with routines and familiar places until recently. It has been a deep dive. I read this forum several times a week and find so many posts that give me both sadness, wisdom and strength. Keeping all of us close in prayer.

annie51

Dear Losinghope, so sorry to read of your situation. I, too, am caring for my spouse and since we have no children, it's a difficult road doing this alone. Yes, there are friends but it's not the same. His only sibling is in another state. I know that I only have worse days to look forward to but this forum is so, so helpful. It's my only way to communicate with people who REALLY understand. My DH is always with me so it's hard for me at this point to think about support groups, exercise classes, etc. My only "alone" time is when he's watching a movie and I'm not, although increasingly he wants me to be there with him.

Just as S. Lynch, keeping all of us close in prayer.

losinghope

I thank you all for your comments, support and advice.

This will, in all likelihood, be my last time here. My precious wife died in my arms this morning shortly after 5 am. She had fallen into a coma-like state about a week ago after failing to eat or drink anything substantial for several days. She and I both agreed on Do Not Resuscitate (DNR) orders long ago and in honor of that I called no one. After an agonizing several days she finally succumbed, giving only a final deep sigh while I held her close.

She will be cremated with no service which was her wish with no family nearby.

My heart goes out to all of you who are going through this.

WIGO23

I am very sorry for your loss. Please know that others do understand and care about the long goodbye you experienced.

JeriLynn66

I am so sorry for the loss of your dear friend and wife. Holding you close in my thoughts and prayers, Jeri

harshedbuzz

I am sorry for your loss.

ImMaggieMae

losinghope, I am so sorry for your loss. You cared for her and did what was possible to keep her safe through this horrible disease. I wish there were words that could ease your pain, but there are only prayers.

midge333

I am sorry for your loss.

trottingalong

I am sorry for your loss. Your DW was lucky to have you by her side.

Kibbee

Ugh a sad thing to lose a spouse. I hope you will be able to find comfort in memories of the happy times you had together:

LJCHR

I’m so sorry for the loss of your precious DW. What a journey you had to go through-we all are on the same journey. Take time now to gather your strength and grieve. You deserve to rest.

Jeff86

Deepest condolences on your DW’s passing. May you find peace in the weeks and months ahead.

ButterflyWings

Losing hope, I am so sorry for your loss. I was just about to post the Tam Cummings staging information again and note that becoming "hyper oral - putting any/everything into their mouth" is Stage 7. DH has begun to do that, as well as pocketing his food and chewing it forever...forgetting to swallow I guess.

Our hospice nurse helped me put two & two together today, and realize he too, is nearing the end of this journey. Though as you said, there is still no clear date on that. Such a roller coaster. I am also caring for my DH at home and can only hope to be as capable as you, in providing safe passage for your precious wife.

Tam-Cummings-LLC-Handouts.pdf

losinghope

I will be bold for Christmas and offer some advice.

Don't let this disease ruin two lives. It's okay to continue to live yours while your loved one is slowly dying. I learned to do it over the years. I put hooks high on all the doors and went out for groceries or for a meal instead of either staying home every day or taking the trouble to have her with me as she got worse. I considered the risk and the possible legal ramifications but my life was going away too. I learned to survive this way.

It's okay for you to stay alive.

Merry Christmas. That's possible too. Decorate even if only for yourself.