My dad suffers from dementia and there are three other siblings besides for me that care for dad. He lives in assisted-living and we spend evenings with him so he’s not alone and he also has a caregiver during the day and he and the caregiver go to different events at the senior living center and eat lunch together etc. it’s just for company.
My dad has recently become scared and nervous about leaving his Apartment. He’s afraid he’s going to get lost. Every morning with my dad is like 50 first dates. And we have a call list with our names next to it that he can call for help remembering. My name is at the top of the list because I have the most flexibility with my job.
Last night my sister thought that it would be a good idea for me not to take the calls anymore. I don’t know why she said that. I told her I don’t mind talking to dad and filling him in on where he is and where he used to live. My other sister thinks that we should leave Dad alone to figure it out on his own. My reply to her was that he needs our help remembering and leaving him alone will make him more scared and frustrated.
I think my dad needs assurances that he is in an OK place and that we will see him that evening and that Rich his caregiver will be over to read to him and go for a walk etc. I’m just puzzled as to why my sister wants to remove my name from that phone call list. One time she told me when one of the nurses called from the place and said that Dad was very confused and upset and asked that the nurse called one of his children, and I went over there to see how he was and to reassure him she told me I was doing him more harm than good by helping him to remember and just comforting him to let him know that everything was OK.
He was moved to assisted living from his other apartment at the senior living center just two months ago so his whole world has changed. He doesn’t see his same friends he doesn’t eat in the same dining room. The only Constants he has R us his children And Rich his caregiver/companion. How should I answer her about me not being Taken from the call list? And what would be the purpose of doing that? My dad will get everyone’s voicemail and not be able to have anyone to talk to. I’m coming to this group for some answers and hopefully you can help me.
I know my dad will never get better from this disease but while he is here I want him to be comfortable and secure knowing where he is. I don’t think that’s too much to ask if you’re living with this awful disease. Thank you
UPDATE 1:
On my recommendation we went to a counselor who specializes in family counseling. We all went and discussed issues with Dad. My one sister who thinks he needs to calm himself all by himself, left for what was supposed to be a one day trip and was gone for 10 days. She got a layoff retirement from work so she feels like she can do what she wants.
I was angry as it caused the remaining 3 of us to reshuffle everything. But I told her that in the sessions and she didnt really react. We all are about the same off financially, so I dont think there is resent ment there. Her son helps with my Dad 2 nights a week (just for company) and we pay him out of our own money. My kids say BS on that, but I am not aware of why she would be jealous of me…
I got divorced after my kids were 2 and 6 and raised them on my own working two jobs. After my Mom died , 4 years later my Dad looked into a senior place and had his own apartment for 8 years there. 2 months ago my 3 siblingss moved him into assisted living, against his Dr’s suggestion. My Dad is fully capable on his own.
His only issue is his memory, and now I can see depression there too. He used to eat breakfast every day. Today he took his meds and went back to bed until 1030 AM, I think he needs a geriatric Dr who specializes in Dementia to help him. I think his depression is really getting bad. And he told me last week he was afraid. Afraid of getting lost becasue they moved him to a place he doesnt know. Its just all so sad. That is why I want to be there for him
Comment:
I think you are doing a good job. Do the people at the center think your involvement is interfering? I would ask for their professional opinion. The reason I say this is that in a new place sometimes they’re best left off a bit on their own adjusting, but I am not sure if this is the case. I am lucky like you to have two siblings and kids, nephews who are involved. The majority of people on this site do not. The downside is everyone having to agree on the care plan. I mean this in the kindest way possible- do your best to stay calm and get along. It will save everyone’s sanity in the end to not shoulder this hard time alone. Wishing you lots of love and strength
Comment:
There is no “figuring it out on your own.” There is no more reasoning or rationale. There is a brain that is dying bit by bit and the person with that brain who realizes something is wrong and is scared. Holy cow there truly is not an issue with behavior, as with a child who still has the capacity to learn.
Comment:
I would like to add my thoughts into this. It sounds as if your sister doesn’t want to accept what is going on with your dad and wants things to stay the same as always. I’m sorry this is causing an issue or a riff in your family. My heart goes out to you. Like others have said DO NOT take your name off the phone list, continue to visit him, reassure him of being in a good and safe environment, you’re being there is a positive thing in a somewhat topsy, turvy situation.
He needs the reassurance and all the love that you and your family are there. In a world of changes and confusion he needs someone that is going to constantly be there for him day in and day out. Dementia/Alzheimer’s patients need the same routine, the same voices, the same sense of security that you and his companion Rich can provide.
Your sister sounds like she’s in denial. I’m sorry for her and I’m sorry for you. Take photos, record memories for you and your children. I know my aunt told us before my uncle was diagnosed that she wanted to record family history, stories,moments of my uncle and his time in the merchant marines, serving on container ships, crossing the equator. I’m not sure if they ever got that done. Perhaps a tape recorder could be used and you could type them up when you get home. What your doing is a wonderful thing, talk to the staff where your dad is and see what their thoughts are. But I would definitely keep doing what you are doing, because you are right they will not remember their family one day.
Another thing is decorate his room with photos of him, of you guys growing up. My cousins did this and his grandchildren all drew pictures and colored pages (according to one, ganpa,needs pictures he can see in his bed). My thoughts and prayers are with you as you go through this process. I’m so sorry.
Comment:
Some people have No Idea what Dementia is – they think it’s just forgetting a few things here and there? Some people also have no inclination to educate themselves about it. So sorry that this is happening for you. Perhaps suggest to your sisters and to any caregivers of your LO that they seek some information on dementia.
You are doing the best thing for your Dad. He doesn’t remember and therefore needs reassuring in those moments so he can feel comforted. It may or may not help him in the long term but in those moments when he is unsure it is the kindest approach – he sincerely isn’t doing it to be an inconvenience or to get attention etc. Also there are still people working in Caring for those with dementia who are not properly educated about dementia. Probably the best approach to care is to do what is kindest and what works to help the situation – which is what you are doing Blessings and hugs to you
UPDATE 2:
I am still on the top of the list for phone calls. I told my sister I was comfortable helping dad and comfortable being at the top of the list to take the phone calls in the morning and whatever else they come. So I think that’s good she knows how I feel and she didn’t fight me on it. She just said she thought I might want to take a break. I said no. I can’t thank you all enough for your suggestions and your support. I hope you have a wonderful evening and I hope that you experience peace with what you were going through