Asking for Help

LJCHR

My DH is in early to mid-stage 4. His only sibling (sister) is now in hospice with Alzheimer's and according to her son can't talk, walk, incontinent, etc.

My question is: our nephew is wanting him to visit his sister in MC - My concern is that, at this stage, him seeing his sister could advance HIS disease. And my thought is it will not benefit either one of them. (I know it sounds cruel but the facts are the facts - and they stink).

Additionally, upon her death, what are thoughts about attending the funeral. I'm reluctant to expose him to any of this, but really need the experience and knowledge from all of you.

Thank you so much for always being there.

Phoenix1966

You know your loved one best. If you have concerns this would be harmful to him, then listen to your gut.

Your nephew has good intentions, but he’s looking at the situation from his perspective and probably what he thinks is “right” (that very ill family members should have their loved ones visit/be around them at the end). At the stage you’ve describe the sister, I would sincerely doubt she would be aware of her brother, let alone appreciate his presence. Or she might think he is someone else (perhaps their father, etc.) and not him. How would your husband react to that?

As for an eventual funeral, again I would suggest to go with your gut. The funeral will be hard on him and you as you manage him through the service. Will he remember it after? Will you have to remind him of it and watch his heartbreak repeat over and over? Some people do decide that not only is the funeral a mistake to attend, but even telling a LO that the person has died is not in their LO’s best interests.

You are his caregiver and you do know best. Sometimes choices that seem hard have to be made for someone else’s wellbeing.

I’m sorry for the struggles you’re facing, but trust in yourself.

Despondent

My DH has dementia. I don't know what stage he is in, but he is at home. Very active. Forgets things easily. Has lost recognition of common everyday objects. He can still feed himself but wouldn't know how to prepare a meal. He can dress himself but needs help picking out suitable clothes for going out shopping. He needs to be reminded daily about taking a shower. He doesn't always take one. Sometimes I have to push it. All that being said. I would not take him to see his sister. As you so wisely put it, what good would it serve. His mother is beyond recognizing her brother and if she did the heartache for both of them would be difficult for them, as well as you, and your husband's nephew. My Mother spoke to her older sister who was showing signs of dementia. My Mother started crying for her sister. I said don't cry for Erna, she is unaware. Cry for yourself and the sadness you must be feeling. We had two family friends pass recently from the effects of dementia. We didn't attend either funeral. My husband would probably have wanted to go if he was aware but I knew it would be too difficult for me, already having to cope with the daily loss of a relationship with my husband. Do what you feel is in the best interest of you and your husband and don't let someone else's good idea, however well intenioned it may be, influence your decision. Don't feel guilty (guilty by whose standards?) Embrace your decision and be affirmed by your ability to do what is right for you and your spouse. Be well!

Jeanne C.

When my husband was in stage 5, his sister called and told him that his desr cousin had passed away. My husband went into a panic attack, started expressive aphasia (literally speaking gibberish), and ended up in the hospital. I think, with your nephew's alzheimer's experience, he should understand (eventually) if you don't take your husband to visit. Maybe do something kind, like send them a comforting meal, to acknowledge that you care, but if your gut says visiting and the funeral will trigger your DH, you are most likely correct. Best to you and your family during this difficult time.

terei

I don’t think sister is aware enough for a visit to have it help her, but I doubt it will have anything but a negative effect on your H. I would not have him visit. I would go to the funeral, to show respect, but I would not take him

michiganpat

I have a sister in a nursing home with dementia. Our brother passed away this summer with lewy body dementia. I didn't tell my sister he died. She still thinks our parents are alive (they died many years ago). It would have done her no good to tell her. My sister in law and I visited her recently and she never asked where our brother was. I bring his name up in conversations and she thinks he was to see her recently. It's actually been well over a year. My brother visiting my sister would not have helped either one. Not too much like your situation but I hope it helps. In my opinion taking him to see her would benefit neither one. You must decide what is best in your situation. Best wishes.

harshedbuzz

@LJCHR

Oof. This is a tough one. I would urge you to follow your gut. I completely understand your need to protect the person for whom you are responsible.

I feel like a person in stage 4 (Tam Cummings puts this stage at a 12-adult age equivalency) should maybe have more autonomy in this kind of decision as it applies to a sibling which is tricky.

I really feel for everyone in this scenario. The nephew may feel his mom is being disrespected and abandoned. He may feel he has been as well if he was close with this man.

HB

LJCHR

Thank you all so much for your feedback. It is all well taken and appreciated. You have confirmed my feelings of keeping him protected. It's hard enough with this disease for just day to day decisions much less the additional difficult ones that arise.

JJ401

When making decisions for DH, I tell myself that you do what you think best at the time. Make the best decision and don't second think.

If you don't think a visit is beneficial, don't take him. If you think the funeral will be unsettling, don't take him. If knowing sister died will upset him, don't tell him. It is not your job to assuage the relative's feelings. Your job is manage the comfort of DH.

ImMaggieMae

I think there is nothing to be gained for either one of them, and it would likely be upsetting to one or both of them. It might make your nephew feel better, but it really isn’t about him when it comes to something like this. If they are near enough, it would be nice of you to visit and later, to attend her funeral, but I wouldn’t take him. Funerals are for the living and I can’t imagine it being in his best interests. We have no idea how people with this disease are going to react. My heart goes out to you and your family.

Joydean

Last year my dh’s sister passed away, she had a heart attack and didn’t suffer. She and I were very close and had been before dh and I were married. When my niece called to let me know, she suggested that I not tell dh because she thought it would be too hard on him. I have never told him but I had to hard time because my heart was hurting on losing her. A couple of months ago his sister in law passed away. She had Alzheimer’s. Again I did not tell him. He is at end of stage 6 beginning stage 7. This disease makes so many things hard. You have to make what decisions that feel right to you and what will be best for your dh. I wish you strength to follow your own heart. Prayers for you!