Need help accepting this and dealing with what is to come.
Interested in more discussions like this? Go to the Caregivers: Dementia group.
@IndianaScott @birdhouseclosed my situation is different in that I am carrying for my spouse that needs a transplant. The one thing that is similar is that he has some cognitive issues, so his decision making isn't always the best. He is the one that pays the bills but he struggles with it now, so I have to help. We've got the paperwork for an advanced directive sitting on our coffee table and we both agree it needs to be done, but like you said, it's a hard discussion, so we keep putting it off. His one year work-up is in a few weeks, so I would like to have it done before we go for it.
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@IndianaScott this is definitely food for thought. I think we will have to sit down and have a good talk this weekend. Thank you.
Need to talk with others with the same situation.
Welcome to Connect and the Caregivers group, @sheilam. You'll notice that I moved your message to an existing discussion about mild cognitive impairment (MCI). I did this so you can meet members like @birdhouseclosed @sallysue and others, who are or have been in your shoes, caring for a spouse with MCI.
While we wait for others to join in, Sheila, can you tell me a bit more about you and your husband? How is he doing? How are YOU doing?
Welcome Sheila,I posted some time ago and have been dealing for four years or trying too at least. My husband was put on meds and stayed stable for a couple of years. This past summer he changed somewhat,less easy going and easily upset. He was then put on another med,but he is still easily agitated. He is not happy with himself and finds it very hard to do what used to come so easily. He had to drop his woodworking and now spends time either sleeping or on the computer. It is very hard for me to watch him struggling to seem to be his old self. I have gone to therapy and it is good to talk to someone who understands my problems. I do not have a support team for some of the same reasons. We have to do the best we can for both yourself and loved one. We will be married 50 years this fall, he is my best friend and I hope for more years to come. Have strength and take care.
Hi @sheilam It is nice to e-meet you here on Mayo Connect even if it is under difficult circumstances. I am glad @colleenyoung pointed you to the discussion others have been having about caregiving for loved ones with MCI. Caregiving is always challenging, but with any type of dementia it is perhaps amongst the toughest.
Who are you taking care of and what is your situation? I am not a medical professional, but I was my wife's caregiver for over 14 years as well as caregiving for my mother-in-law who had frontal temporal dementia.
Feel free to ask any questions and I hope I can be of some help!
Courage, strength, and peace!
I just read an interesting Mayo newsfeed post that you may find helpful.
Exercise Intensity for Heart and Brain Health: Try the “Talk Test”
You must have untold strength. It has been 3 years of dealing with this. Yes you are correct MCI is as you assumed. I find that taking over his role as far as finances and important decisions go is challenging as he was always my ROCk an could always count on his decisions and help. I am dealing with depression and anxiety, but I can't find a way out as of yet. I am under treatment but find I cannot talk to him about how I feel which would make him feel irresponsible. I would appreciate any insight anyone could give.
Hi there, I was diagnosed almostt two years ago with MCI at the age of 64, a week later I had a heart attack from the stress that such news caused. I survived the heart attack, but have been left with anxiety issues. Now, I am a retired RN who worked many times in my career with Dementia patients. My father died at 78 from it and his side of family have strong dementia history. I’ll tell you from my side what helps me best even though I have a wonderful support systems comprised of my husband and two daughters. Patience, lots of patience, understand that when we say or do things many times we can’t control what we think or comes out of our mouths. I have lots of “cognitive reserve” so most people don’t realize that I have a problem when they see me for short time or meet me for the first time. However, my husband, has to deal with me everyday and can tell the difference. There are times when I don’t like myself for,what I say or how I act with him, I know I hurt his feelings; it is hard, wry hard, but rember that it is even harder for us. I was strong, type A personality, ran the household as long así we’ve been married,and now I rely on him for a lot. I am scared to death for not knowing what kind of person I am going’s to turn into. Whether this loving man that has been with me for 40+ years will stop loving or liking me. I have MCI, plus strong family history, plus I am positive for APOE4 and MTHFR so my deck is very negatively stacked for Dementia in the near future. Remember that MCI is not Dementia yet, and that about 30% of people afflicted don’t necessarily crossover to Dementia. I see a therapist and take antianxierty medication, no other meds since the available dementia meds don’t help. Also attend an early stage Alz and MCI support group once a month, read as much as possible about Dementia, do brain games, try to see friends once a week, although there are days when I don’t want to do anything or go anywhere, when I am very anxious and scared to even accompany my husband to the grocery store. My husband has a breakfast group once a week and he goes to gym 3 times a week. That helps him some. Social interaction and time out for you is as important as social interaction for your husband. I am very grateful for my husband, at this point I don’t need much “caring”, but I am very grateful to have him because the future is grim. Hang in there, love him, don’t take it personal when things happen, he is still there, but love yourself as well.
Anyone in this position must make sure to take care of himself (the caregiver). You have to get out, see (normal) people, and have some outside work or at least activities. Without that, you can't survive.
I hear you, @jshdma I agree self-care is important for caregivers, but one thing I learned early on in my years of caregiving was that each and every caregiving situation, due to every patient being different, is unique. Often times we must remember not everyone is able to do the same things for their patient or themselves as someone else might have been able to do. Plus support structures, location, family situations, etc. all can vary greatly
While we can suggest what might help our fellow caregivers, not everyone will be in the situation where they can do what is suggested.
Strength, courage, and peace!
I've cared for three generations of family members and this is my 21st year (soon to be 22) as a family caregiver. Experience taught me that self-care has basics (eating right, getting enough sleep, etc.) but it has variables too. What is self-care for me, such as writing health/wellness books and articles, may not be self-care for you. Each caregiver needs to figure out what works for them.
You are right. Advice may or may not apply universally but it is individual. Moreover, people may agree with the advice but not be able to use it for themselves. The one universal element here, unfortunately, is how difficult caregiving almost always is. Talk is easy, action is hard.
Well said @jshdma I like your words! So true about caregiving!
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