Of Two Minds About Posting This-I'm On A Deathwatch

[+ Gar1eth]

My Dad has Alzheimer's. My Mom probably noticed a few things starting 10 years ago or so. In 2009 she convinced my Dad that it was time for them to give up their house and move into a retirement community because she was smart enough to see there would be a time when they needed the services provided, and she wanted to move before it became a necessity.

 

My Dad's decline was fairly gradual. He was still driving until around 5 years ago although for the last two or so, my Mom wouldn't let him drive unless she or another family member was in the car (she hasn't driven for years due to some vision problems).

 

Gradually over the last 5 years my Dad became quieter and quieter. He would talk if you asked him questions but didn't usually initiate conversations. He was happy and alert throughout though-glad to go shopping with my Mom, glad to go out for a weekly lunch with my Uncle, glad to visit my brother who lived near them.

 

I haven't gotten home as often over the last 5 years. I was home Thanksgiving 2014. Dad was as I described him above. He would sit in his chair watching TV. He could still respond to us verbally at this point. He could greet you quite normally. He could tell you he felt good if asked. He would need help ordering from a menu. He would often get the same things my Mother ordered. He had a good appetite. But he couldn't tell you what he had eaten for a meal 30 minutes after eating.

 

My Mother's birthday is near Thanksgiving. We had planned going out for dinner with a few relatives. She told us she didn't want us buying a present for her from my Dad. Sensibly she figured that if Dad had no notion it was her birthday and the present wasn't really from him-why bother.

 

Dad surprised us all. (I get teary when I think about this). My Dad had heard us say we were going out for my Mom's birthday. My Mom went into the bedroom to get ready. Once she went into the bedroom (this part is a bit fuzzy in my memory as it happened a little over three years ago), Dad indicated to me that he needed to get Mom a present. I'm pretty sure that he expressed that to me verbally. It was a bit complicated as we were supposed to be leaving in about 30 minutes from then to meet family at a restaurant. I won't go thru everything I did. But I managed to get Dad to a Walgreens where we picked up a birthday card. He couldn't really read at this point. But I found an appropriate card. I read the sentiments, and he approved of the card. He attempted to sign it-had problems and wanted me to sign it for him. But we took it slow, and he was able to sign it himself. I also managed to find a website of a dress shop that my Mother liked where you could buy gift certificates online. With his approval I used his credit card, bought it, and printed off a certificate.

 

There was no time to give the present to my Mother before dinner. After dinner once we got back to their place, I pulled my Mom aside. I explained that we had gotten her a present. She said, "I asked you not to." I told her that Dad had expressed a wish (I'm getting choked up writing this) without any prompting from me or my siblings that he needed to get her a present. That of course meant more to her-or me-than any actual present.

 

Then for various reasons which I won't go into I didn't get back home for over a year. I was supposed to be there for Thanksgiving 2015. But I wasn't able to make it. Over that year my Dad went downhill fast. He became much less verbal-no longer really able to converse much or take care of his "self-care" activities. He also had a surgery in March/April of 2016. After the surgery, he was definitely not himself. And my Mom made the decision that he needed to be in a nursing home facility.

 

I was able to get home in March/April while Dad was still recuperating from the hospital. Since then things have gone basically downhill at a steadily faster rate. He's been in a total of two nursing homes and a psych hospital which he probably should never have been sent to.

 

In the psych hospital last summer-he somehow hemorrhaged internally-he was on a blood thinner. He was taken to the intensive care. He required 4 to 6 units of blood. He stayed for several weeks. At discharge to the second nursing home, the doctors didn't think he was going to last two weeks due to some swallowing problems. I came back home. He fooled the physicians. Instead of getting weaker he got stronger. He was still responsive at this point. He could even speak although not usually full sentences. He remained in that facility from July until September.

 

My mother finally had enough of the screw-ups and lack of care of that nursing home. And in September she found a care-home. It's a 'normal' house that's been modified. It's located in a residential area and only has 5 other residents-although there is room for more. While the care home is only staffed by CNA's as opposed to the LVN's at the large nursing home, my Dad has received much better/personalized care there than at the larger facility. It's also about $3000 dollars cheaper a month than the larger nursing home where he received worse care.

 

My Dad has continually gone downhill as expected with Alzheimer's patients. **There has been a significant decrease over the last two months with him getting more and more lethargic, eating less, and less responsive. My brother called me a week ago to say that Hospice had certified him for another 60 days of care, but that they had told my Mother that they doubted they would need to extend after that.

 

** I forgot to note earlier that as Dad has become less verbal he has for a long time had what seems to be either chronic or intermittent episodes of pain for over 6 months. No one has been able to diagnose what's going on. And as Dad has become less verbal, he hasn't been able to tell is what was going on. When he was deemed to be terminal last summer, he was put on scheduled doses of narcotics and Ativan. These have continued sometimes more doses-sometimes less. But without them he seems in pain and agitated.

 

I was then called this past Wednesday to say that Dad had gotten even more lethargic on Tuesday. They weren't able to get him to eat and he seemed to be having breathing problems. In my mind I'm thinking-ok he's ill. But he might recover as he has in the past. I make arrangements to get home

 

Due to distance I wasn't able to arrive back home until Thursday. I find the situation is more serious than I thought. While this past November/December when I was here he was non-verbal, often tired, and I'm not sure if he always knew me-although when awake he would often smile when he saw me. Now he's basically comatose at this point.

 

He's on Comfort Care Measures only.We have 24 hour hospice nursing at his beside in the Care Home. He's on oxygen. He's not eaten or had anything to drink in 2 days. He's being continued on his narcotics/Ativan. He's also on Atropine to dry his secretions. I'm here with my Mother and siblings. There's no way I can envision he's ever going to wake up again. I doubt he knows we are here. This AM his blood pressure was only in the 80's. It's only a matter of time....

 

Gman

[+ Charlie]

G-man, I fully understand your need to verbalize all of this, and I can sympathize completely, having been through somewhat similar situations in the past, and I can look ahead to the possibility of another one in the future. Life happens--it's unpredictable and uncontrollable. You just have to deal with it however you can, and be kind to others and yourself, and accept the need to grieve.

[Larstrup]

I too, can sympathize completely with your situation. My Dad's last three illness's prepared me for what I once thought I was prepared for beforehand. I wasn't. His last illness was 37 days hospital and instead of nursing home rehab afterward , this time it was 12 days at hospice. If that wasn't bad enough, we were informed that he wasn't passing quickly enough (in kind and subtle terms) as most hospice-house settings are short-term stays. The inner-conflict and worry over this was over-bearing in the given circumstance. As Charlie said above, be kind to yourselves, support one-another and do the best you can. These are some of the toughest times you'll ever go through.

[BasketBaller]

Nothing I have ever experienced in life compares to the wait for someone to finish his or her time with us. And nothing helped me more than sharing with sympathetic friends what was happening. Thanks for including us in your vigil, and please continue to as much as you're comfortable doing.

[bigvalboy]

God bless you Gman. My heart goes out to you this morning. This is the natural order of things. Be kind to yourself, and know that you are not alone. Many here pray for you and your father. I pray that he goes in peace.

[+ not2rowdy]

I feel your pain. Your story is a near mirror image of the situation our family went through with our father.

 

It might help to know that death is part of life. We all face that in the end. All the miracles of modern medicine will not stop the insidious progression of Alzheimer’s. Pain management is the primary focus at this point.

 

You have done all you can. Focus your attention on your mother. I highly suspect that would be your father’s wish.

 

Tears fall as I write this final comment…but let him go.

[+ sync]

Your experience is more common than you can imagine. I'm sure you will find many here who empathize. Sincere sympathy to you and yours.

[RM]

Your experience is so difficult. It reminds me how lucky that my 92 year old Mom passed away unexpectedly in her sleep. Her memory was declining some, and we were helping her a lot, but she was doing OK. We thought a little time in rehab and she'd be back home. Her funeral is Tuesday.

[+ purplekow]

I think it is best to concentration on the living he has done, rather than on this dying process. He has a loving family around him at this critical juncture. He is loved and he is receiving excellent caring. Clearly, he accomplished a lot in the life which brings you all there to witness his passing. Celebrate that life now by expressing to him, and each other, some of the ways he made your life special. His passing will never be an easy memory, but in short order, it will be overshadowed by the many good memories you have of his life.

I wish you strength in this difficult time. I do not have to remind you that you are lucky to have others around you to support you, as you are there to support them. Share your grief and it will be eased. Share your joyous memories and they will be multiplied.

[MikeBiDude]

Hi Gman, focus on family, our thoughts and prayers are with you...

[jawjateck]

I empathize because I'm following along on a similar track. It's hard to let go. I'm doing it too....just a little bit every day.

My prayers and well wishes go out to you and your family.

[playwrestler]

I echo all the sentiments above. My mom passed a few years ago after a long bout with Alzheimers. Take special care of yourself... and do something purposefully and solely for your body -- a bath or schedule a massage etc -- to let it know that you're aware of its pain and are taking care of it too. So many times people forget their physical self when tending to their emotional/rational self.

[jgoo]

My heart goes out to you G-man. I am living it with my mother as her full time caregiver, with help from others of course. Intellectually I know a great deal (and am learning more as she progresses) but emotionally I struggle to cope at times. As others have said, there are many who have gone through similar things (although the reality is that every Alzheimer/dementia patient progresses differently). Reach out to support groups that exist. Even this forum is useful as you can see from the responses. I think many of us would be more than willing to lend an ear and offer our advice/suggestions if you feel so inclined to ask. This will be for me, and perhaps for you, one of the most challenging things you've had to deal with yet in the face of the ugliness of the disease. However, my hope is that you may be able to find something to help you cope and grow in ways you could never imagine. Best of love, and if you care to please keep us informed...we care.

[+ azdr0710]

spending time at his bedside will help you feel better - now and after he has died (and, to be honest, I think the phrase "passed on" is a quaint and dated term).....we used hospice for both my parents and it's fantastic - so nice to know their last days are spent as comfortably as possible......the hospice nurses told us that the patient, though in a coma-like state, can hear people talking.....don't know how entirely true that is, but don't be afraid to simply tell your Dad out loud that family is with him at the moment and taking care of him.....

 

and don't forget to go take a walk, eat, sleep, spend time for yourself during all this, too......

[BabyBoomer]

Stay strong Gman. I'll keep you & your family in my prayers. If you feel like talking during this most difficult time, your many friends here will be more than glad to listen.

 

~ Boomer~

[Becket]

It's really great you have this space to process what you are going through. Doesn't make it any easier. But you know you're not alone. Peace to you and yours.

[Good Grief]

I totally agree with what @azdr0710 says. All of it. And you're being thought about.

[Chuckball]

Your story was obviously written with much love. Thank you for sharing your feelings with us. Your love, care and devotion to your father would be what any father would want his son to exhibit. You are a remarkable person and although your dad cannot express it I am sure he would be very proud of you.

[rvwnsd]

@Gar1eth , my heart goes out to you, your Mother, your family, and your Dad. This is a very tough time and it is good that you have us as an outlet. Having been through the deathwatch myself I know it is sad. Hang in there.

 

Big hug

[+ Eric Hassan]

My heart goes out to you and your family. I wish your father, you, and your family peace. I hope you have many great memories of your Dad. I imagine his spirit is comforted by having you all by his side.

 

I'm also on a similar path with my mother. It's painful in a way I never imagined.

 

We don't know each other, but if you ever want to reach out, I'm just a PM away.

 

Big hugs.

[OneFinger]

@GMan, Thanks so much for sharing your story. I didn't have to deal to Alzheimer's, but I do remember how difficult it was to see my parents terminally ill and under hospice care. It tears you up emotionally - especially when there's nothing you can do to make it better. The last few days for my mother, she slept a lot, drank very little, and didn't eat. Thanks goodness for the IV drugs that we knew were keeping her comfortable.

 

Hang in there and know that you've got an extended family here that cares about you and your family.

[tyro]

We wuv you!!!!!

Writing about this was a very brave thing to do. Sending some spare angels your way.

T

[gallahadesquire]

With Apologies to All Who Might Find This Insensitive:

 

This is a very touching story. As with the rise in Autism Spectrum, or with Sleep Apnea (a treatment in search of a disease), one wonders whether the rise in Alzheimer's (which was taught to me as "Pre-Senile Dementia", implying that senility was part of just getting old) is really more prevalent; people are getting older; or too much McDonald's is the cause.

 

Disirregardless, I'd like to take the opportunity to get on my Soap Box [and I'm not even in London] to say:

 

Please discuss care issues with those you love!

Mental faculties; terminal life issues; all that kind of stuff. Please discuss it with those who will be in charge. Ask them what they want. Personally, I have no idea who will be in charge of my body when I get to that condition. I hope that they understand that any condition, and I've had a few (60% of lung function GONE with a pulmonary embolism), that would leave me unable to communicate with the world, i.e., masturbate to porn or have a meaningful sexual interaction, means to pull the plug.

 

But they won't know it unless you tell them. These are very uncomfortable conversations to have; but most people are relieved if they understand that it is really in their own best interests, and to know what their wishes are. Me: I want at least 16 hr/day of hunky men to bath and dress me; make me breakfast (I don't care if they can talk intelligently about art); and keep me "occupied" in the afternoon to evening. With any luck, I'll fall out of bed in the middle of the night, unattended, and they'll find me; steal the TVs and the Silver (they won't notice the Rolexes) and call the police.

 

From the time I got into Medical School (age 24; I was a slow learner), my MOther reinforced the ideas that (a) I would guarantee the ability for her to commit suicide if she wanted it; and (b) to withhold life support if it wasn't going to get her anywhere. Which made "pulling the plug" on her so much easier: Even the hospital was surprised at the vociferousness with which we asked for Comfort Measures Only.

 

GMan, I am sorry for your having to experience this. It's difficult, although I'll always remember the last conversation with my mother before she died (about two weeks). Basically, she was in Elmhurst IL and I was in Central MA. She heard me laugh, and thought that I'd let a fart. "You Farted!' she exclaimed, "I can smell it from here!"

 

As someone (apologies, it's late) in this thread has already said, remember the good parts of a person's life. In Christianity at least, we are All One Body. As long as one is remembered, they are with us.

[NuSingle]

My heart goes out to you as I know what a painful journey this has been for you as I lost my mother to Alzheimer's on New Years Day 2016.

I actually thought it would be a sense of relief from the death of a thousand cuts, but I was very wrong and unprepared. The moment she died I felt like she knew who I was again and it made me miss her even more. It's been well over a year and I still have urges to pick up the phone and ask her a question or to share something with her that's going on in my life even though we basically were unable to have a phone conversation during the last couple of years of her life.

[+ José Soplanucas]

My thoughts are with you, G-man. My parents are still alive, dad is 82, mom is 79. I am in DC, they are in Argentina. One of my nightmares is that something bad will happen and I will not be there. Live and deeply experience every second you can hold his hand and feel his warm.