Anger

AnderK · January 11

So yesterday my dear one told me I was upset with him too much and he didn't understand why. He is right, I am. And I know he doesn't understand the burden that I carry. The constant repetitions. The constant denial of his that he should use a walker. Last night I literally threw the walker aside as I was trying to get him up from the couch into which he sank, just to go upstairs to bed. Then it is my anger that is the issue. I know I should calm down, and I know it is affecting him.

Ŵe bought a set of stair lifts for our three story home this week. I was surprised at the price... just over $8000 for two. About the cost of a month of memory care. Perhaps that will ease my angst. They won't come too soon!!

Learned that my book club is going virtual this week so I am going to read my book today and forget about all chores that don't involve AdDLs.

Well, that was kind of a silly statement, wasn't it! Maybe just listen to my book while doing all the ADLs.

And watch my river, my solace, whenever I pass the window. Kathy

Kibbee · January 11

I am sending you positive vibes that your DH will quickly adjust to using the stairlifts, and that this will bring some stress relief to you.

The most stressful time I have had thus far as a caregiver was the period when my DH was still walking but was experiencing falls. As his condition deteriorated it also became a huge physical challenge to assist him to transfer from bed / recliner to wheelchair. Now that he no longer walks at all, and I have a Hoyer Lift to make transfers easy, my stress level is way down and I feel I can power on with keeping him at home.

CindyBum · January 11

As folks reassured me last week — you’re human walking one of the hardest we can walk with our LOs; please try to give yourself a break. You will make mistakes, because you’re not perfect. None of us are. Big hug

M1 · January 11

I'm sorry Kathy. I remember those days very well. My partner has been recommended for a walker several times but won't do it and likely couldn't remember to even if she was willing. Refused to do physical therapy after a hospitalization in October. More or less waiting for the fall that really injures her, I don't know what we'll do then.

Any way you can get some help at home so that you can have breaks? Would he consider day programs? Those did not work for us either, but I just have to throw them out there. It was anger and frustration with the repetition that initially brought me to this forum in August 2021. We were in MC within the year.

Whyzit2 · January 11

My anger disappeared when my DIL told me “this is probably the best he will ever be”. Somehow it led to a level of acceptance I hadn’t experienced before. (((Hugs))$

White Crane · January 11

Kathy, you're right, he doesn't understand why you're angry with him. When I get angry my DH doesn't understand either. He looks at me and asks me what he did and says he is trying to behave himself. Then he usually says, " I will just shut up." It's heartbreaking to watch and heartbreaking to go through...for both of us. I try very hard not to show my anger but sometimes it erupts. It happens. I hope you can forgive yourself and accept that you are human and are doing the best you can do in this situation. I'm glad you were able to get the stairlifts. As far as using the walker, my DH won't use one either unless I insist. Then it's only for that one time and it's back to using his walking stick. I'm sorry it's so hard. Sending big hugs.

Brena

AnderK · January 12

https://alzconnected.org/discussion/comment/194362#Comment_194362

Brena, if he is really tired and I put the walker in front of him, he may use it, but won't again. His reasoning is that it makes him weaker. So I bought another cane so at least he isn't trying to carry a cane upstairs while trying to use our double banisters. Nope, they both ended upstairs, with him trying to then use two canes to walk instead of the walker. Really stable, that! Thanks for sharing.

AnderK · January 12

Hugs back to all. I have tried responding to several of the comments, but seem to have failed, so I am going to respond in one comment.

Thanks for all the reinforcement. I so wish I could take him to a day care setting. He wouldn't go, and the amount of work it would take to get him ready makes me exhausted just thinking about it!

He believes that using a walker makes him weaker. Just like the PT exercises are a waste of time, unlike sitting watching videos on his phone.

I too am waiting for "the big fall" that requires an ER and possible hospital stay, that will trigger alternate living arrangements.

Yesterday, he did no stairs, and he stayed in our master bedroom and bathroom. He sat in the rocker for much of the day, then took a nap while I went down to the kitchen to cut up vegetables for homemade minestrone. I went up to check on him, and spent almost two hours trying to coax him out of bed to change his clothes, only to get him back into bed to go finish making the soup. One of his comments was that he was so cold, and he called me, and I didn't answer, so he thought I had left him. Then he didn't want help, until he did.

What a roller coaster we are on, folks. I often think I am the one that is sundowning!

Well, the new day starts in a few hours. Thanks again for the reinforcement. It is good, but sad to know what similar pages we find ourselves on.

Best,

Kathy

tetwoman · January 17

I feel every bit of everyone's story here. The anger is ever present for me, and I know that it just makes things worse for both of us so I end up swallowing my feelings, which isn't good either. I felt so out of control and depressed that I considered taking an anti depressant but finally settled on talk therapy as a way to share my feelings and maybe get some new strategies for anger control. I know that this is a nightmare for all here, and I often feel that I am living in an insane asylum. My DH of 46 years is still at home with me and because I live in a rural area, there are not a lot of options for care outside the home. A big part of me wishes for a medical crisis that will precipitate residential placement - how screwed up is that! I love my husband so deeply and yet I just want out. And then comes the guilt. And the come the tears. And then comes the anger.

M1 · January 17

Hi tetwoman. I'm going to challenge you a little bit and say that you don't necessarily have to wait for a medical crisis to initiate placement. Is there some reason that you feel this is not a step you could take on your own? Is it guilt that makes you feel that way?

tetwoman · January 18

I still see my husband that was, at different times during the day. He is aware of his surroundings even though he does not know that this is his home and that I am his wife - that happens 2 or 3 times a week. There is a decent nursing home near here - memory care facilities are 1 -3 hours away. I cling to the idea that his placement would occur when he absolutely wouldn't know where he is or who I am anyway. It otherwise seems wrong to take the choice away from him as to where and with whom he lives. I also feel that he would go downhill much more quickly. So yes - it is guilt.

Three months ago he was hospitalized with pneumonia and RSV and was practically catatonic. The doctor and hospital staff started making inquiries about placement, and I was all for it, as I knew I couldn't take care of him at home - and then he recovered so much in the hospital, that I was able to bring him home. He is ambulatory and take care of his own ADL needs.

cpeloni · January 18

I am new to the group so please forgive me if I repeat something that has been posted before. My partner of 30 years was diagnosed with bladder cancer in 2019 and had his bladder removed June, 2019. he has a urostomy bag which has to be changed every other day. since day 1 he has never ever even looked at his stoma. so of course I change the bag etc. He went thru chemo from November 2019 until March 2020 when Covid hit. He did well and was fairly entertaining as well. Heart issues flared up and pacemaker was placed July 2020. His hearing has been going for a while as well. proud, vain and big ego but it made him eccentric and fun. We started noticing a change in his personality, memory in and around January 2021. He has had essential tremors for a while so the neurologist was already familiar with him. The doctor put partner thru some tests and said he had mild cognitive impairment and memory loss. suggested some stimulating activities etc. Partner will not exercise at all. We have a pool and refuses as always had pre diagnosis to swim etc. Things started progressing and Dr. prescribed memantine for memory. I was lucky to find him and me help 4 days a week 4 ears each day. Lovely lady changes bag etc. For the past year plus partner will not bathe. personal hygiene is horrible. We have to bully him to shower and even then it's maybe every 3rd or 4th day. He has new hearing aids but will not wear them as directed. Skin rashes and lesions, seborrheic Dermatitis said the dermatologist. Meds x 5 which he will not use. When I got upset the other day after repeating myself 3 times he said I was low class and didn't treat him well. I know it's not him talking but the disease. He has no income and owns nothing so he doesn't qualify for assisted living beyond what welfare will provide. He lives in my home, sleeps in a hospital bed and at this point sits in a club chair watching t v in the den all waking hours. I had a retinal stroke in April from high blood pressure. My health is not great at this point. He does not believe he gives me stress and when I mention being under stress his standard answer is " why because I'm alive. ". He has two adult sons who are busy with their own lives. 4 siblings back east who don't seem to care as they have their own issues. He is on a lit for placement but because it is welfare bases and need it's been 18 months. I don't have funds to pay for a facility as I help support my daughter and her 6 kids plus pay for 100% of this household needs. I'm tired and just don't know what to do any more.

M1 · January 19

Hi cpeloni, welcome to the forum. You may get more responses if you start a new discussion rather than posting on an ongoing one-but no matter.

Do you have power of attorney for your partner? You may need to talk to a certified elder law attorney about your legal and financial obligations and to be sure he is qualified for long-term Medicaid coverage if that is what he will need for care in a facility. if he is a military veteran there may be options through the VA also.

AnderK · January 24

https://alzconnected.org/discussion/comment/195093#Comment_195093

You said much in your comment, but my eyes and heart went back to the first line..."I still see my husband that was, at different times during the day."

As I have read entries in this forum, I hear that alot, in one form or another, and that is what makes so many of us think "not now, not ÿet. It isn't time. Not yet. " to placing him her in a care facility. He

I, obviously, don't have a solution to this, but wanted to reach out to you about how spot on that that was for me.

Kathy

tetwoman · January 27

https://alzconnected.org/discussion/comment/195744#Comment_195744

Thank you Kathy. It is such a crushing sadness that we all endure. I have started making what I think are smart moves. The local rehab/nursinghome has quite a few AD residents, but private pay is anywhere from 10 - 14 thousand a month. So I made an appointment to consult with my eldercare attorney to see what I have to do with my assets for him to qualify for medicaid. And I am going to look at a memory care facility about an hour away. Since he started wandering at night, I can see how the decision is going to be easier, the more difficult he becomes and the more exhausted I get. All that said, it is truly a comfort to know that there are others going through the same experience

jfkoc · January 27

We used to say;

do not reason

do not argue

do not expect

Good things to remember

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