Family members

Barbie300 · September 3

Hi, My DH was diagnosed with MCI about 7 years ago. His progression of Alzheimer’s has been slow but has now reached the point where he can’t do much at home other than bath and dress himself. He does walk the dog which helps tremendously. He seems to think he’s perfectly normal. He can’t remember anything much and seems to think a lot of things happened that didn’t. He appears normal to most outsiders but doesn’t talk much when we see others. We have 2 children that seem to be in denial about his condition and don’t offer much support where he’s concerned at all. It is really weighing on me that I feel I’m totally responsible for everything in our household including things he has usually done like car maintenance for example. It really becomes a problem when I get a minor illness and have no help at all. I’m sure there are a lot of people in my same situation, but just needed to vent.

BikingOldMan · September 3

Hello Barbie300. Your post caught my eye because of your reference to your 2 children and that they seem to be in denial. Given my experience with my DW I've come to the conclusion that until family members actually live in the situation (2-3 day to a week I'd say) they will not see the magnitude of change from DW's "normal". A family reunion we attended where my daughter and her sons met us at the airport presented a golden opportunity for them to see DW at her confused best, and myself at my wits end! They took over the watching after her while I got our rental car. We then were living in the same multi-room suite with daughter, grand children and my wifes siblings. I prepared meals for us while others enjoyed the restaurants and activities that a Florida beach vacation can provide. Now there is understanding of her condition. Unfortunately, DW's sibs live literally all over the US, and daughter passed away with cancer in 2023. We do see our reasonably nearby son at least once a week, and occasionally he will spend a weekend or overnight. At this point he is our main source of help.

I saw the term "showboating" used in a post here somewhere - meaning PWD on "best behavior" with others, seemingly normal. It does seem that PWD's can become excellent actors. Good luck as you cope with the inevitable changes.

Lilydaisy · September 3

Our two children see their mother (my DW) and understand she is quite different. But one likely doesn't understand the severity because of more limited time. The other spends more time with her, takes her out for errands. She also saw my mother go through this and has a healthy perspective. I agree that the person with Alzheimer's adapts to social situations where it is mostly small talk. She is very good at that, as was my mother, so I agree with what you are saying. That's all good, although it probably suggests to them a healthier person to others than she really is.

RetiredTeacher · September 4

Unfortunately when our loved ones get sick, there is often noone but us. It is a lot to arrange plumbing repairs, hiring painters, fixing fences and learning to use uber when the car needs maintenance and your loved one doesn't drive. It's a lot to take on when are spouses used to be so handy and capable but we can learn to do these things. It amazes me how normal my husband can seem when people see him infrequently. I had a heartfelt talk wirh my stepson today who reported that his father was doing fine when he spoke on the phone last week. I told him about all of the serious comorbodities he has and physically he is declining at a faster rate than his cognitive decline. I explained his world is shrinking and time is not on his side. I told him how much it would mean if he took him out for a hamburger…while he still can. I can't make him do it but know he will regret it when his dad is gone. We really truly are on our own and are stronger than we know.

l7pla1w2 · September 4

https://alzconnected.org/discussion/74001/family-members

If you asked for a virtual show of hands on this discussion group as to who else had experienced what you have, many, many hands would go up, including mine. You describe DW's condition for several years. One exception is, we don't have kids, so it really was all on me. I placed DW in memory care in April.

What's interesting is that, once I got around to (selectively) telling friends about DW's dementia, many of them said they wondered, but were afraid to ask. Usually they had first- or second-hand experience with someone with dementia, and they picked up on the signs that would not be obvious to others. I think my neighbor was the first, in 2019. Her father had dementia. She asked me, somewhat elliptically, "Is [DW] okay?" I asked what she meant, and she proceeded to tell me that DW seemed a little off. An hour-long conversation ensued.

Be careful about letting DH walk the dog. I let DW do the same, but she eventually started getting confused, and I had to walk with her. You should probably alert your neighbors about DH so they can help him if it looks like he 's confused. You should also contact your local police department to provide them with information about DH and a photo in case he gets lost. (Ironically, the one time I had to contact police, they came to the house and asked for a photo, even though one was on file. The office took a picture of my phone with his and texted the picture to other officers. Much quicker than having to go back to headquarters to did up a photo.)

Be sure to get all your legal paperwork in order, particularly power of attorney and health care directives, while your DH is still somewhat lucid.

SDianeL · September 4

it’s mentally and physically overwhelming to take over everything with no help. If you can, hire things done. Even housekeeping help. Burnout for caregivers is real. Get respite care if you can. We know how you feel. Hugs. 💜

Milo4455 · September 4

Youtube is our friend! Changed out my jeep battery this last Monday. Felt accomplished, yet very sad at the same time. My stepson came by the other day for a rare, yet brief visit with his dad. I texted him afterwards letting him know how much it perked up his dad. We shall see. His three kids are all grown and it's their choice. Its all so emotional, all so frustrating. As others have said hire help if/when you can.

Biggles · 11:13AM

Barbie its difficult to manage and seems extremely unfair but we are generally on our own. No one including caring family can take responsibility for our life and all the bits that go with it, changing light bulbs, fixing flat tyres, plumbing problems and the list goes on. I have just had a rage on here about the same thing. I have found that all the information you want is now at our fingertips just google or utube its all there and although it can feel a bit lonely we are as good as the men when it comes to figuring things out. As for the kids we also have 2 adult children and 5 grandchildren; out daughter is so loving towards her Dad showers him with love and has 3 gorgeous sons 16, 14 and 10 but no practical help, our son is as attentive as someone who is 1500kl away can be. He phones is sympathetic, gives practical advice if I ask (he is an Engineer) and lent us $10,000.00 when we sold and moved and will not take it back. We have been blessed with very good children but still no one can physically do much to help. If we are lucky we can rely on ourselves and we must fill in the gap where our partners used to be. Good luck and take care.

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