Bereavement with Alzheimers

[Ceridwn]

this is my first post on here as i have only just managed to find the forum and read through some of the posts.
My dad of 85 has always cared for my mum with Alzheimers with help from me on a daily basis. My lovely dad sadly passed away a few days ago so as now an only child (my brother died 2yrs ago) i have had to move into mums to look after her. This happened 4wks ago when dad went into hospital. I am married and have a daughter who lives with us of 23 and a son who lives in london. I have not even processed yet that my dad has gone as i am so wrapped up in caring for my mum.
I am feeling a little overwhelmed how long this could go on for. Mum is familiar with her surroundings in her own house but its not my hime and hasnt been for the past 30yrs.
What on earth do i do and how do i start to change things when she doesn’t properly understand that she has lost her husband. I am sat in her house with her in bed while my husband and daughter are sat in our home without me. I am feeling completely alone.

 

[Woo2]

Hello @Ceridwn . Welcome to TP from me.
I am sorry to hear about your dad.
I don’t have much advice but just wanted to say hello and welcome . There is a wealth of knowledge here from the fab members and it’s a great place to let off steam and to be understood.
There are things you can do , such as needs assessments etc but I don’t know much about that so will leave it to experienced members to let you know .

I am in a similar situation , lost my lovely dad in April, moved mum in with me and family as I could not move in with her due to my poorly daughter . She has settled in amazingly well but it is a huge commitment and adjustment by all of us. I hope you gain some comfort and support from here , please keep posting . Sending a hug , you aren’t alone . Take care

 

[Dimpsy]

I'm very sorry for your loss, it's such a sad time when you lose your father, there is a subtle shift in the universe and life changes.
As a family, you are still grieving for your brother and now with supporting mum through mourning her husband, you have the responsibility of your mum's future to think about, not withstanding coming to terms with your lovely dad not being there to lean on.

Like @Woohoo, my mum (Alzheimer's disease, early to middle stage) came to stay with us a few months after dad died. Initially it was a temporary solution that became permanent and with adjustments and patience, we all rub along fairly well (at the moment!).
Mum was frightened living by herself and gladly gave up her independence for the security of being with us, as well as being part of family life again, she has coped remarkabley well, her physical health has improved, her mental state shows no sign of detioration, in fact, it has given her a new lease of life.

That may or may not be the answer for you, there are so many considerations to take into account, and if you make a decision which doesn't work out as planned, try plan B - or C or D!

Take advice from wherever and whoever and you will have lots of support from this forum, just don't wear yourself into the ground with worry, as much as possible share the decisions that will have to be made and look after yourself.
You are probably so busy at the moment that you haven't the time to think about your dad. I was like that, it was as if poor dad had been forgotten in amongst all the decision making of the funeral, what-to-do-about-mum and other family matters, but my brain was just prioritising and when life settled, the grief of losing dad bubbled up and I was able to cry in my own time and in private for him. I cried a lot.

 

[Ceridwn]

I'm very sorry for your loss, it's such a sad time when you lose your father, there is a subtle shift in the universe and life changes.
As a family, you are still grieving for your brother and now with supporting mum through mourning her husband, you have the responsibility of your mum's future to think about, not withstanding coming to terms with your lovely dad not being there to lean on.

Like @Woohoo, my mum (Alzheimer's disease, early to middle stage) came to stay with us a few months after dad died. Initially it was a temporary solution that became permanent and with adjustments and patience, we all rub along fairly well (at the moment!).
Mum was frightened living by herself and gladly gave up her independence for the security of being with us, as well as being part of family life again, she has coped remarkabley well, her physical health has improved, her mental state shows no sign of detioration, in fact, it has given her a new lease of life.

That may or may not be the answer for you, there are so many considerations to take into account, and if you make a decision which doesn't work out as planned, try plan B - or C or D!

Take advice from wherever and whoever and you will have lots of support from this forum, just don't wear yourself into the ground with worry, as much as possible share the decisions that will have to be made and look after yourself.
You are probably so busy at the moment that you haven't the time to think about your dad. I was like that, it was as if poor dad had been forgotten in amongst all the decision making of the funeral, what-to-do-about-mum and other family matters, but my brain was just prioritising and when life settled, the grief of losing dad bubbled up and I was able to cry in my own time and in private for him. I cried a lot.

Thank you for your response and what you are saying makes perfect sense other than mum can’t be let alone. At the moment I can’t relax at all as at any time she can state she’s going out and fo and get her coat. If she’s at my house she won’t settle so I can’t even relax in my own home. The only time she is ok is if we are out in the car or n her home doing what she wants to do which is normally moving things about the kitchen and muttering to herself. She went into respite a few weeks ago for 2 nights and it was awful as she just didn’t settle at all. I don’t know how things are ever going to change to be honest.

 

[canary]

Hi @Ceridwn . Its a worry, isnt it? And you have suddenly been hurtled into caring all the while you are trying to grieve.
It is hard when they reach the stage of needing 24/7 care. Obviously your dad used to provide this, but there is now a huge gap. There arnt many options once you get to this stage. You can get home care, but Social Services will not offer more than a few hours a day; if you wanted a live-in carer it is very expensive and often difficult to manage. You could move in with her, but I dont think this is a good option. She may be happy, but you could not sustain it - you have a family who also needs you and you cannot abandon them.

The only other options involve moving your mum - either for her to come and live with you permanantly, or to move into a care home. Changes in environment is usually very unsettling for people with dementia, especially once they reach mid stage (which it sounds like your mum is) and it can take them a couple of months to settle. I think this is why she is unsettled when she stays with you and why the two nights respite wasnt very successful. I do feel, though, that ultimately you will have to move her and I think that you will have to think quite hard about where to. I think that she will be quite challenging to care for in your home.

 

[Woo2]

Had an afterthought , when Mum first moved in, I felt completely lost and out of my depth . I did call Alzheimer’s Society and spoke to mums navigator and also the Admiral Nurse for advice which did help me hugely . She did take a while to settle here but got there . As canary said you cannot be expected to abandon your own family . Oh and mum moves things daily but at least it’s in her room. Look after yourself too.

 

[Dimpsy]

Hi @Ceridwn, very like my mum in fact. The agitation could be a symptom of the disease and mum's GP may be able to prescribe something to calm her. Mum was always on edge in her own house which we put down to insecurity (and AZ), and it took mum a while to settle in with us.

(My reply may seem out of context, started and then put on hold when mum wandered into the kitchen for breakfast, now eaten and she's washing up which she loves to do, and @canary replied in the meantime, who is spot on with her comment about having a PWD living in the family home is a huge undertaking. I couldn't manage without the help of OH and eldest daughter, who lives at home, plus younger daughter and neighbours who help a lot too. You will need a support network).

I've also forgotten the thread of what I wanted to add!

The gist was if your mum is happiest moving things around and muttering, let her, repetitive actions with familiar things in familiar surroundings is her comfort and as long as she can't leave the house without being spotted, don't worry too much - at least not about that!

The despair you are feeling comes through in your words and all I can say is don't look at the whole picture, live an hour at a time.
More than anything, be kind to yourself, if you go under, where does that leave the rest of them!

Put the kettle on for a cup of coffee; if you are organising dad's funeral, think of his favourite hymn/song to include in the service, write it down with a funny/memorable moment you shared together. Prepare lunch, take mum for a walk after and write down mum's GP phone number or SS contact details to get the ball rolling tomorrow. Make tea and watch Strictly and then comment on the TP Strictly thread.

Hour by hour, that was the only way I could cope in the beginning with the enormity of our horrendous and frightening situation, which gradually became day by day, but it took eighteen months before life settled into a rhythm that was acceptable to all of us. There is no quick fix unfortunately just head down and get on with things.
xxxx

 

[Ceridwn]

Hi @Ceridwn . Its a worry, isnt it? And you have suddenly been hurtled into caring all the while you are trying to grieve.
It is hard when they reach the stage of needing 24/7 care. Obviously your dad used to provide this, but there is now a huge gap. There arnt many options once you get to this stage. You can get home care, but Social Services will not offer more than a few hours a day; if you wanted a live-in carer it is very expensive and often difficult to manage. You could move in with her, but I dont think this is a good option. She may be happy, but you could not sustain it - you have a family who also needs you and you cannot abandon them.

The only other options involve moving your mum - either for her to come and live with you permanantly, or to move into a care home. Changes in environment is usually very unsettling for people with dementia, especially once they reach mid stage (which it sounds like your mum is) and it can take them a couple of months to settle. I think this is why she is unsettled when she stays with you and why the two nights respite wasnt very successful. I do feel, though, that ultimately you will have to move her and I think that you will have to think quite hard about where to. I think that she will be quite challenging to care for in your home.

Thank you so much for your response, I cant tell you how much it helps to know there are others that are going through the same or have been through this. I honestly don't think its practical to move her in with me both for my nerves and for her peace of mind. You would think that SS who offer respite would consider that mum wouldn't settle in and therefore not mention that a weekend would be a good idea. Thank you again xx

 

[Ceridwn]

Hi @Ceridwn, very like my mum in fact. The agitation could be a symptom of the disease and mum's GP may be able to prescribe something to calm her. Mum was always on edge in her own house which we put down to insecurity (and AZ), and it took mum a while to settle in with us.

(My reply may seem out of context, started and then put on hold when mum wandered into the kitchen for breakfast, now eaten and she's washing up which she loves to do, and @canary replied in the meantime, who is spot on with her comment about having a PWD living in the family home is a huge undertaking. I couldn't manage without the help of OH and eldest daughter, who lives at home, plus younger daughter and neighbours who help a lot too. You will need a support network).

I've also forgotten the thread of what I wanted to add!

The gist was if your mum is happiest moving things around and muttering, let her, repetitive actions with familiar things in familiar surroundings is her comfort and as long as she can't leave the house without being spotted, don't worry too much - at least not about that!

The despair you are feeling comes through in your words and all I can say is don't look at the whole picture, live an hour at a time.
More than anything, be kind to yourself, if you go under, where does that leave the rest of them!

Put the kettle on for a cup of coffee; if you are organising dad's funeral, think of his favourite hymn/song to include in the service, write it down with a funny/memorable moment you shared together. Prepare lunch, take mum for a walk after and write down mum's GP phone number or SS contact details to get the ball rolling tomorrow. Make tea and watch Strictly and then comment on the TP Strictly thread.

Hour by hour, that was the only way I could cope in the beginning with the enormity of our horrendous and frightening situation, which gradually became day by day, but it took eighteen months before life settled into a rhythm that was acceptable to all of us. There is no quick fix unfortunately just head down and get on with things.
xxxx

Ou are spot on when you say about taking things hour by hour as sometimes I wake up with her and I am immediately thinking about the rest of the day and the dread of how I am going to manage everything. I think that is definitely something I am going to do both with mum and with Dads funeral arrangements. I cant tell you how reassuring it is to know people are out there to support.
At some point I will need to go through the process of finding a care home but I guess thats another mine field I need to explore separately. Thank you so much xx