MCI caregiver and already stressed.

elainejr

My DH is diagnosed with MCI, not dementia yet so I’m told. He is still very functional and can take care of himself and drives and can run errands. Why should I be whining? It’s the lack of memory and the stress on me, I’ve dealt with anxiety and depression all my life and I fear I’m not handling caregiver very well. I do all the finances, remind him of appointments and commitments for both of us. I don’t understand how he can be so good one day and not the next, Twice today I have told him of news affecting both of us…..twice today he repeated it 2 hours later like he is telling me something new, I’m not supposed to remind him I told him, am I???? I’m sure I’m not….he says it stresses him, but it stresses me when he doesn’t remember. I have no real family support except to tell me I should be glad for what he can do. Believe me, I am. I really worry how I will handle things if it deteriorates further.

Ed1937

Elaine, I'm sorry it is so hard. The people afflicted are all different, and the caregivers are also all different. If it gets to the point where it is too much for you, don't listen to others if they tell you that you should keep him home. Trying to push yourself to bend to the wishes of other people will likely take a real toll on your own health. Your life is at least as important as his. We'll try to help whenever you have something that is concerning for you.

JJ401

Although it's hard, not reminding him you told him or heard it before, is best. Telling him stresses him, and his stress will further stress you. As the song says -- let it go.

Have you looked in your area for a caregiver support group? When DH was at MCI stage, I found one in my area (affiliated with the state Alzheimer's group) that is very helpful.

Your worries are our worries. We all worry about how we will handle things as they progress. One place to start, if you have not yet, is a visit to an elder care lawyer to understand your state Medicaid rules and help you get your finances in order.

PookieBlue

Hi Elaine,

   When my DH was dxd with MCI, we had already spent thousands of dollars in repairs that resulted from his lapse of judgment and loss of memory. This dementia life has not been easy from the get go. Unfortunately it really is about deterioration. The caregiver has to learn to adapt to all the changes because the afflicted person can no longer reason. Although the spouse is expected by everyone to be the caregiver, not everyone can nor should do this. Try not to be so hard on yourself. With time and listening to others on this forum you may find the help you need to not lose yourself in this journey. 

   What has helped me the most is to distract and redirect him. I listen to what he says so he feels validated, but I try not to get caught up in an outburst. Over the years I learned to recognize the triggers that will set him off and I steer him away by changing the subject or giving him a piece of chocolate or a small task he might be able to do. I avoid much conversation about his alcohol use or the need to sell some vehicles. Those are lose lose topics that never end up well. Surprisingly, he gave up driving a few years ago and didn’t seem all that upset about it. He still thinks he drives about 10% of the time so I don’t say anything.

   I found that I rarely give him a heads up about something that needs to be done, but that I know he will react to negatively. For instance, I’m looking into adult day care and I will be making the arrangements and I will just take him there. I will use as many fiblets as necessary and not feel the least guilty about it. At least that is my goal. 

   I don’t ask for nor expect much support from family members, so far anyway. I’ve been taking it a day at a time. I make sure I find lots of me time, even though he is always nearby. If I didn’t I wouldn’t be able to do this at all.

Denise1847

Hi Elaine,

Please don't beat yourself up. This is a difficult journey. Please don't remind him that you just told him as he can't help it. He has brain damage. He is doing the best he can. I went from being frustrated, to angry, to depressed to crying all of the time (not in front of him). My suggestions are: take one day at a time, take time for yourself and be good to yourself, listen to the people on this forum, read "the 36 hour day" to learn more about the disease. Please let us know how you are doing.

toolbeltexpert

Elainejr yep you knew, but it's only by practice you'll get better at it. I don't think anyone here has a PhD in caregiver. All the advice others have given is good. How do cna's learn? They read and practice. The last few days I have been learning how to get my dw to sit. Sounds crazy but there is a technique and it's only by practice that I'll get it. Today I had 3 times she went straight to the potty with my help only once did she bound back up thinking she was going to miss the seat. I gave myself a pat on the back. Redirecting and special techniques, try try and try again. If you mess up most of the time they won't remember for long. Please don't worry about venting here we get it, you need to say it, to validate it, yes this is really happening to You as well, except you haven't changed, you remember! I have done the same things. I fell into the giving it back blowing up, yelling feeling bad, then I learned not to roll my eyes. It's luckily all the changes don't hit all at once, most of the time it's slow progression and about the time you master one thing it changes. The good thing is by then you got skills to build on the next thing. My dw is in mc almost a year but I am still her caregiver just part time now, I still have to learn how to handle things if I am gonna help her. I am just part of a bigger team now. Like you I had zero family support,other than as a sounding board, so I understand how it is.

[Deleted User]

The user and all related content has been deleted.

Gthoma

All good feedback above. Only thing I'd add is it gets easier - not because PWD gets better but we get better as caregivers the more practice we get. I find I really have to make the effort to forgive. You may find this too. Forgive DH or DW in my case for the disease they can do nothing about. Forgive yourself for not being perfect from day 1. It takes practice and we never get perfect. Forgive family and friends who find it hard to deal with this change. Best wishes to you and your DH.

harshedbuzz

@elainejr

There are unique challenges to each stage of dementia. IMO, early isn't necessarily "easier" for either the PWD or the caregivers.

Dad had a challenging personality ahead of dementia. Early on, he was aware of his diagnosis and short-term memory loss, but he wasn't aware of critical early losses of executive function and empathy which made him irritable and unpleasant to be around. It was if he was constantly spoiling for a fight. Depression in men often looks like irritability.

As he became more impaired, he had less energy and ability to remain agitated and angry. He also developed anosognosia which protected him from appreciating how impaired he was which made him less hypervigilant and easier to keep calm.

Psychoactive medication was a godsend in those days.

HB

RCT

Hi Elaine….my husband got the MCI diagnosis in 2016 and then 2 years later Alzheimer’s diagnosis…it has taken me all this time to adjust and I find acceptance and gratitude are my best tools. It’s a roller coaster for sure and every day is different. A local support group would be most helpful. My husband goes to a memory class once a week and that is good for him. All the previous comments have been right on. It does get easier despite the decline. It’s a whole new way to communicate and live. Be kind to yourself.

justbreathe2

Hi Elaine, this is my 1st post. My DH also was diagnosed with MCI a month ago. The neurologist started him on 5 mg Donepezil. DH tested with psychologist one year ago and they want him to retest next week. My DH and I know he is worse so not sure if it will be helpful. We had hoped for a pet scan. I understand your frustrations and it is wearing. It’s worse when DH is stressed/excited or tired, so I try keep days as calm as possible, or distract him. I note everything on his calendar. My husband is also very functional as yours. Very intelligent man and retired with successful career. Used to read a book a week. Can repair/ plan anything. Still plays musical instruments. He was a private pilot for years and can still fly only with instructor. It’s a grieving process when I see he has forgotten most all our memories together.

My adult son recently visited and my DH did not trust him and argued with me about things my son said or did that were not true. This was so unlike my DH and they always got along. My son lives out of town so we only see him once or twice a year. My son understands the disease. It was a very stressful, hurtful week. My son and I decided best he stay in hotel next time. I pray everyday for strength, courage and direction. I understand everyone is different and worry how soon things will get worse.

elainejr

Thank you everyone. Since I wrote this I vowed not to remind him if he already told me something. I ignore or just shake my head yes. I didn’t think it would make less stress for me, but it kind of has. Not worried yet about driving as I have ridden with him and he doesn’t need directions while driving. I keep a close eye on our financial accounts and credit cards. I watch and observe a lot …..in two weeks he will have his 6 months appt with the dr. He knows what is happening and it makes him sad so I try to let him think he’s doing as much as possible. Thank you for letting me vent. I need to learn how to make myself more active and not just sit with him.

SDianeL

First we understand your emotions and have been there. My daughter said it best. She said about caregiver training... "will they teach me how to have patience" ?? No they won't. Some days I have to dig deep to find it. I still lose my temper after 2 yrs. Then I feel guilty. It's a roller coaster of emotions. Please read the book "The 36-Hour Day" about memory loss. It gives tips that have helped me greatly. Get him a calendar and write things down. Get him a digital clock with the day, date, time. Don't tell him about appointments ahead of time, tell him right before. Reminding just makes them more agitated because they can't remember. You are now his memory. What Victoria2020 said. Who diagnosed him with MCI? Did he have the 3 hour exam by a Neuro-Psychologist? That's important because they learn to mask and cope with memory loss. I was shocked when the Neuro-Psy told me he could no longer drive. She said he definitely had visuospatial problems. "A person with dementia may also have 'visuospatial difficulties', when the brain has problems processing information about 3D objects. This can affect a person's spatial awareness or the ability to judge distances. They may have difficulties using stairs, parking a car or recognizing objects." When she said that, I remembered he had been driving very slowly and hitting curbs and overly cautious at intersections. He's always been a good but fast driver. She said that with an MCI diagnosis on record, if he were in a wreck even one that wasn't his fault that would be financially devastating. So with that diagnosis, my DH agreed to stop driving. We also went early to get a DPOA drawn up by an attorney and so glad we did when he was able to sign it. Don't wait. We sold our RV and I was able to sign for him. I also signed for him on a lease for our apartment. This community is the place for support and for info. Wishing you strength for your journey ahead.

toolbeltexpert

Elainejr that just sitting with him is what I did alot of. If I went out and mowed or did something when I came back in she would be in a rage for who knows what. So I didn't get alot of stuff done, I was lucky in the fact that dw was deaf without her hearing aides, I could vacuum and clean at 4 am as long as I didn't us much light, that would get her up and of course, I would get in trouble if she caught me. You will find what works for you.

[Deleted User]

The user and all related content has been deleted.

elainejr

To the person who asked, yes he has been seen by a Memory Care Expert that does the full exam, He has an appointment next week and I am dreading it. This morning he went to a planning meeting for a funeral he will conduct (as former pastor for this woman) and came home with no notes, I asked where his notes were and he pointed to his head. I visibly groaned and he did not like that even though he admits he needed to talk to the family again after doing the husbands funeral as he didn’t remember everything. The setting got thrown off, he wasn’t able to write easily and rather than make sure he could write……he didn’t want to acknowledge in front of someone else, I know he doesn’t remember a thing that was said. I said something later about the funeral as I am playing organ for it and he couldn’t remember. Again I sighed….and he yelled I was putting more pressure on him than he already had, Well…..that didn’t end well as I am the one who tries to help him so others don’t notice what is going on so much. One of the things I hate is that he can say anything and I am supposed to roll with the punches, but nobody counts the stress on me from what he said, Of course that would require family to be around and pay attention….they don’t, I’m not doing this caregiver thing very well and I’m not deep into yet,

[Deleted User]

The user and all related content has been deleted.

Ed1937

Elaine, I would suggest that you copy, then print Victoria's last post. You can hand it to one of the family members (along with an explanation of the problem), to make sure nothing goes wrong at the service. Like she said, this is a very important thing for the family, and her post covers everything.

elainejr

It would help if I knew the whole story before I write. He is not doing the whole service and he already has plans to meet separately with the family. The niece who is active in this church knows what is going on so we have already addressed that. The regular pastor now will be running the service…..

I just need help or need to learn not to totally dissolve when something goes wrong. All of this stress is compounded in years of anxiety and depression. It will take me awhile to learn …….please be gentle.

Ed1937

Elaine, it's OK. It's OK. If the regular pastor is running the service, he should know that he might need help, so he can be on the lookout. As long as the regular pastor knows about it, God will be there to oversee things. You need to do some deep breathing exercises, and maybe play some relaxing music to shed some of the stress you feel.

elainejr

Thank you. I know you don’t know me or us but my husband would never do anything to hurt the solemnity of a funeral service and a grieving family. I should not have mentioned that.

justbreathe2

Victoria2020.

Thank you for your comments. My DH has declined flying with instructor several times in the last 3 months as he feels what is the point if he eventually will have to give it up. He gave up and sold his motorcycle over 10 years ago. He dreams of flying and riding again and I see no harm listening without any encouragement. He just takes it for granted I drive everywhere and does not argue about it.

Yes, thankfully our papers have been up to date.