"You're not the only one dealing with issues!"

Posted by rxw1853 @rxw1853, Jul 3, 2023

In early 2022 I left a multi-decade professional job to become a full-time caregiver for my wife, who has moderate dementia, psychosis, severe gait and balance problems, and has had many falls - the worst of which resulted in a skull fracture. We are in our mid-to-late 60s. She is now disabled to the point of being almost bedridden, does not leave our home, and needs help with all activities of daily life. The symptoms progressed rapidly. We have run a seemingly endless gauntlet of CT scans, brain MRIs, brain PET scans, blood draws, over the past two years: no diagnosis yet other than ataxia due to possible cerebellar degeneration.

I've reorganized my life to become my wife's full-time caregiver, working from home while reducing my workload. I help with her needs and handle all grocery shopping, meals, cleaning, laundry, household and appliance repairs, medical appointments, etc. Spare time is very limited.

As a result of these rapid changes in our lives, I have been slow in responding to friends' emails, texts, WhatsApp messages, and calls. Some friends do offer support and express concern once I inform them of my wife's condition. But others have been annoyed, saying that I should be paying more attention to them, that I'm too focused on my own situation - thereby making me feel guilty about being a careless friend. When I provided one person with some details of my wife's condition by way of an explanation for my recent lack of contact, I was scolded "you're not the only one dealing with issues in life", as if I had been too selfish or had a martyr syndrome. Unknowingly, I had hurt this person, and I was taken aback.

I would be grateful for communication tips and stories about how others find time to stay in touch with family members and old friends, without sounding defensive or complaining or making excuses. Many people seem to want to hear only upbeat messages, in my experience. But what if the underlying disease is untreatable or cannot even be diagnosed? How much detail do you provide about the reality of your loved one's condition, medical or diagnostic challenges, and the frustrations and burdens involved?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Rxw so sorry. But during this time you will find out who your real friends are. Sometimes we learn that they are really just associates or someone that was just hanging on to you. A real friend would give you a chance to talk, share your heart with and ask what they can do to help you. Has this “friend “ even come by to see you? Did he care for your wife? I once told a “friend “ (I was having a really bad day with my dh) that I didn’t know a hour to sit on the phone with her, that I barely had time to go to the bathroom, but if she really wanted to talk to me come by my house. I could not leave my husband alone, because he’s dying with a terminal disease and no it’s not contagious. I know that sounds mean, but it’s the truth. Dementia has no cure. You will find out just who your real friends are. Many friends will just drop away. I think some are just afraid, or they don’t know what to do or expect. Does any of your wife’s friends come by or call to check on her? This disease is horrible, and I hate what it does to our love ones and what it does to us the caregivers. Be strong because you are stronger than you think. You can and will do this. We all will!! By the grace of God we will!

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@teacher502

I am so sorry for your wife's illness, but quite grateful to find many "kindred spirits" here. My husband was diagnosed with LBD early in 2018 at the age of 63. He is now in stage 6 of the seven stages....and....I....am....so sad and tired and overwhelmed at the responsibilities that keep popping up. Scott, one of the best contributors, wrote an excellent piece called "The Calvary is not Coming" and this post has given me clarity, strength, and the desire to finish this lonely journey with all that I have to give. (I hope someone will share his post again here, because I don't have the time to look for it...and it would be encouraging to you.)Friends mean well, but unless you have been in this position, they have no idea that it consumes your entire existence and pushes you beyond what you thought your limits would be.
As I was reading your post, I kept thinking that if the disease was mine instead of my husband's, he would be taking care of me just like you are doing for your wife. I know your wife is grateful for all that you are doing and, even though she can't express this very well, she is probably so sorry that this is the journey you both have to live. May God Bless you beyond all measure and may you finish strong and be able to look back and know you did all that could be done.
Jan

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Wonderfully said! I, too would like to re-read (and save) Scott’s post about the Cavalry. It was perfect. Bless you.

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Hi @rxw1853, Thank you for your post. You've gotten wonderful comments and support from other members. My husband was diagnosed with Alzheimer's in 2019, but I knew things were not right a couple of years earlier. He's in pretty good health, except for breaking his hip in January 2022, due to falling over a package left at the front door.
Early on, I decided to share his diagnosis only with those who need to know. Since I've been his caregiver, I had and recovered from open heart surgery. In addition to restrictions on social life placed on us by COVID, I had an undiagnosed autoimmune disorder that was extremely painful for over a year. This all resulted in a small life for us, that makes things a lot easier as I can focus on him and maintenance of our household.
You don't need guilt trips laid on you by so-called friends, or to be distracted by all the demands of social media. So now is the time to separate the wheat from the chaff. If you can carve a little time out for yourself, do it when you can, but do what you truly enjoy and what will restore your spirit. Wishing you the best, Teri

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I am catching up and want to thank everyone for your thoughtful responses and sharing your journeys! l was motivated to post, in a moment of some pain, by other threads that have generated great posts and responses - like Bill2001's "The Cavalry is Not Coming". And this thread is also proving how incredibly valuable this Mayo Connect community is. I've read and will be re-reading your responses and thank you for sharing, helping me become stronger in this difficult journey. Thanks so much -- rxw

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@rxw1853

I am catching up and want to thank everyone for your thoughtful responses and sharing your journeys! l was motivated to post, in a moment of some pain, by other threads that have generated great posts and responses - like Bill2001's "The Cavalry is Not Coming". And this thread is also proving how incredibly valuable this Mayo Connect community is. I've read and will be re-reading your responses and thank you for sharing, helping me become stronger in this difficult journey. Thanks so much -- rxw

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Like others here, I was hesitant to mention that someone who said that to you may not be a true friend. As mentioned above, by Teri, “…time to separate the wheat from the chaff.”Take good care of yourself, and try to surround yourself with people “who feel like sunshine”. (I read that somewhere). Be well.

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Two ways to find out who your friends are. Be sick or your spouse is mentally or physically. The other is to go broke for one reason or another.
Experienced with both.

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I am so very sorry to read your words. People can be so callous and uncaring at times! No one understands the trials of being a caregiver until the have first-hand knowledge!
Do you have access to any home health care or groups in your area that help? It would be nice for you to have an hour or two off once in awhile. Have you asked any friends or relatives for help? This can be one of the hardest things to do but can be beneficial for you and your wife. Praying for strength for you!

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@fritzie

I am so very sorry to read your words. People can be so callous and uncaring at times! No one understands the trials of being a caregiver until the have first-hand knowledge!
Do you have access to any home health care or groups in your area that help? It would be nice for you to have an hour or two off once in awhile. Have you asked any friends or relatives for help? This can be one of the hardest things to do but can be beneficial for you and your wife. Praying for strength for you!

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We are good right now and I know where I stand. Take off 4 hours or so every now and then

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@centre

I find I feel better NOT talking about the details with friends and family, beyond “Unfortunately, Bill has vascular dementia, we’re staying pretty close to home, maybe you’d like to come over sometime.” With friends/family, I leave/respond to e-mails with short, no details re dementia care. With phone calls, I talk or return calls as I can fit in, and often say, “Oops, gotta go!”, if things start to go downhill at home.
People don’t want to hear the gory details (maybe they’re afraid of the diagnosis happening to them or someone they love). Reciting the details depresses me. It is what it is, it’s only going to get worse. Online support groups with dementia caregivers, virtual or one like this are your best bet. I pray a lot, helps to pour things out to the One who cares.
We’re here for you. “Friends” who would be unkind to you are not friends, that’s a difficult truth to hear. Family who are unkind are often self-absorbed and probably won’t change, so no need to worry about them. Practice self-care, you are doing a beyond difficult job.

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@centre- OMG, you sound like what I did with emails and calls. And the last thing I wanted to discuss was Dave's symptoms. I was living them! And nobody knocks on your door asking if they can do your dirty laundry or clean your toilet! I kept the seat down!

"We're here" for you means something entirely different to me than it does to people who say it. It means nothing because nothing happens if I don't make the next step.

Any form of dementia is difficult to deal with. Dave was getting up one night, and because of a slippery comforter, he slid right off the bed while I yelled, "NO." While he was trying to get up, I was on the floor trying to straighten his legs, because of his disease, his legs were like steel. We were on that damn floor for a good 2 hours. I finally got him to crawl and we got his 2 arms up on the bed and the rest is history. We wound up laughing but I was very scared that I wouldn't be able to get him up. The lesson in this, I think is that it's a funny story but it goes beyond that. It's the wet floor, the complete change of clothing, a drink of water and still having to go to the bathroom. And the relief of not having to spend the night on a wet wood floor.

I subsequently found out that you can call your fire department and they will come to your house and get someone back into bed or get them up off the floor.

Are you still struggling with this?

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@fritzie

I am so very sorry to read your words. People can be so callous and uncaring at times! No one understands the trials of being a caregiver until the have first-hand knowledge!
Do you have access to any home health care or groups in your area that help? It would be nice for you to have an hour or two off once in awhile. Have you asked any friends or relatives for help? This can be one of the hardest things to do but can be beneficial for you and your wife. Praying for strength for you!

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In my case, I'm based overseas and fortunately we can source home health care at a very reasonable cost - it just takes time to find the right person. This will be the best solution for me as all my relatives and most of my closest friends are in the U.S. Some friends have recently moved away due to unfavorable developments in my host country. So it's gotten lonely.... I still hope to move back home but a lot will depend on health care options / costs as I understand Medicare does not cover home health care in particular, or dementia in general.

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