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Topic Deciding Upon Moving into Independent Living Go to previous topic Go to next topic Go to higher level

By sunshine On 2012.06.25 02:30
We are presently in a condominium and the expenses to live here are becoming much more challenging for us.

For sometime now we have discussed that perhaps we should sell and move into an Independant Living home where we could still be very independent but have our meals and some of the services we pay for now, provided for us.

It is a very big step to make this move and we are cautious but feel we are almost ready to do something. Now feeling the necessity due to the cost of living in our present home.

My husband is 8 years older than I and his Parkinson's is definitely progressing and I know that he will enjoy the socialization and activities etc. that independent living would provide. I on the other hand, have been told very adamantly that I am not ready to go into a facility such as this. by my family and our friends. I don't know. I am in my early 60's but what do people do if this isn't a solution and a move must be made. We don't really want to have to move twice and we certainly do not want to live apart. That would be very hard for us both. I'm betwixt and between. Is there anyone else that has encountered trying to make this kind of decision and how did you do. I'm really getting very concerned about our finances and how we are going to manage when I have to retire even though I only work part time.

By gap2010 On 2012.06.25 15:57
Dear Sunshine, I say do what you feel in your heart is the right thing to do. You are married to your husband and you carry a lot already with the responsibility of taking care of him, the finances, the household things, and yourself. If you feel this would be better for you and for him, then I say do it. I know your family means well, but they are not the ones who are facing life in this way. For myself, I could never live apart from my husband if there was any way to avoid it. I love him too much and there will most probably come a time when it becomes unavoidable. That being said, it is ultimately up to you and your husband what you decide. Take care and God bless.

By parkinit On 2012.06.25 22:51
I agree with gap. Only you and your spouse know the full picture and you should not be compelled to have to explain it to others. Ultimately, it is you and your spouse's decision. It sounds like you have thought it through thoroughly. I would not let what others opine to sway your own thorough assessment of the situation.

By sunshine On 2012.06.28 23:08
Thank you very much for your support and kindness. I agree that I should follow what is in my heart. I understand that the children and friends mean well but that they are not in my shoes. It is so difficult sometimes to make decisions that are life altering when the Parkinsons doesn't always seem to be as bad at times and it fluctuates. I tend to hold onto the good times we have and forget how truly hard it is a lot of the time. The mental issues are particularly difficult to define as they change from day to day.
We are going to see about adult daycare next week and visit the facility. There is respite there as well as a program that will take my husband for a full day as well. Meantime I am going to put our search into place for independent living as well.
Thank you for your replies. Good help and input for a difficult transition. I'm so glad to have found all of you on this amazing site.:)

By mytngenes On 2012.07.08 05:08
Sunshine, my husband (who has Parkinson's) and I are getting ready to do the very same thing~independent living. He is 59 and I am 55. I work full-time 45 minutes away from home and he's currently at home by himself most of the day.

By moving into an independent living apartment he will have his meals provided in the dining hall of the assisted living facility. He will also have access to much-needed social activities as well as a nurse 24/7. And should he need more supervision, he can be moved into the assisted living area (but I would then need to rent an apartment nearby, outside the facility). This arrangement is more cost effective than having in home help while I'm at work during the day.

The facility we are looking at is much closer to my work, so my commute will be cut in half. He will be taken care of during the day and this will relieve at lot of my current stress. We have two children, and they are split in there reaction: one thinks it's a great idea and much needed, the other thinks its "too early" in the disease progression to do this. My instincts tell me it's something we must do for his well-being and my sanity.

My thoughts and prayers are with you as you (like me) struggle to do what is best for your husband.

By parkinit On 2012.07.08 23:08
I wish we had made this decision earlier. Now, I am told by our home health nurse that my PWP is too far along for us to be accepted at an assisted living facility.

By Parkspouse On 2012.07.12 23:08
Sunshine: I am very familiar with your dilemma, for we are living the very same experience! I, too, am in my early sixties, and my husband is nine years older than me. For three years we have known that we have to move to a safer home, for he has trouble getting up the three steps at the doorway (we did have a ramp built at one door which is wonderful for him), and the bathroom surely needs to be made handicap accessible. He began with "freezing" episodes last summer, and within this last year he had gotten much slower and confused, and his speech can be sometimes difficult to understand. I already have to help him shower, get dressed, and use the bathroom (sometimes three times in the middle of the night). We considered and really looked in to building an addition to our home, but in my heart I think I knew even that wouldn't really address the inevitable caregiver responsibilities that I will have to face. We've looked at condos and 55+ communities, but whatever we saw, we would still have to invest additional money to make it adequate for us. There was always some gut feeling that kept us from making a decision. A few weeks ago we visited the site of a new 55+ community, thinking that if we have a new condo built exactly to our specifications, that would be our answer. We had it drawn up with every possible handicap and universal design specification. In spite of the uplifting thought of a beautiful new, carefree home, I still had reservations. First was the money we would be investing - more than what we had ever planned or imagined, but we were thinking it would be worth it; I also didn't feel comfortable with only one bedroom downstairs (there was a second bedroom upstairs, but, again, I just had this gut feeling about that not being a good idea), and finally, I would, most probably, still be on my own with the caregiving and needing to bring in all sorts of help as thing worsen. In addition, I feared that after all this we very well might end up enjoying (?) this beautiful new place for only a year or two - then what??? In the meantime, for the last year we have been fortunate enough to have been welcomed at a lovely assisted living community near us where we go four times per week to participate in their exercise and yoga sessions. Recently we thought about mentioning our housing indecision and fears to the director there for some feedback. Today we may have finally had an answer to our prayers when the ongoing conversation with the director went to my husband's long-term care insurance policy, which we had simply never considered for our immediate situation. The director, very familiar with our situation, suggested we move there in a two-bedroom apartment, and after confirming with the insurance company, it would be completely paid for for about five years! Who knows what our situation would be by that time, but in any case, the money that we would have invested in the new condo could then buy us another five years. The reality of that possibility is still sinking in. I, like you, would not be separated from my husband, so there is no question about me joining him there. It's an enormous trade off: space, privacy, room for limited everything etc. etc. etc, but the thought of having all that help to assist me in getting through this is an enormous relief. We have also been assured that, no matter how intense his care becomes, they will accommodate his needs. In addition, I still have to work for another year, and the thought of leaving him home every day has really bothered me (I know day care is an option, but I also know he wouldn't go). So, at the moment, it really looks as though we will go for it. We are both laughing about the possibility, and never expected this to be our answer. If it wouldn't be for the insurance policy, I really don't know what we would do. The thought of just staying put until he got so bad that he had to go to a nursing home has been so painful. The uncertainty of the future, and the experiences of others at home have been really frightening. I know I will be somewhat out of place at the assisted living, but the director is well aware of this and has encouraged me to still have my own life and come and go, knowing that my husband will be in good hands. This is the first time I have ever posted a word on line, and I sure have been chatty, but the relief in talking about this with others who are living the same experience has been valuable. I know we will shock our family and friends if and when we decide upon this assisted living option. A little voice inside me still wants to question whether or not we are being premature with this move, but an even louder and hurtful voice constantly reminds me of the cruel reality that simply breaks my heart for the both of us.

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